Reinventing Emma (13 page)

Chapter 20

Handballed to Talbot

After weeks of preparation, I finally left Dalcross Hospital in NSW via ambulance with my mum. Dad met us at Melbourne airport and took us directly to Royal Talbot Rehabilitation Centre, the place that was to be my home for several months. Unlike the prestigious Dalcross Hospital, Talbot was a squat yellow-brick building in a nondescript suburb, surrounded by concrete car parks and bounded by busy roads. In my mind I'd built up my return to Melbourne, but now my heart sank. Mum and Dad wheeled me into the eerily silent reception area. I sensed their nervousness at handing me over to strangers, but also their hope that here I would somehow be transformed back into the Old Em. Although I was warmed by that optimism, deep down I feared that I was too broken to fix.

My parents cautiously steered me down what felt like endless empty corridors, following the signs to the Mellor unit, the neurological ward where I was to be rehabilitated. I felt sick and dizzy from the short wheelchair ride and utterly exhausted from the huge day of travelling. We finally approached a dated, fluoro-lit nurses' station. From my wheelchair perspective all I could see was the worn green lino floor. Above me Dad chatted to a bubbly nurse and signed forms. My admission sorted, the nurse seized control of my wheelchair. The wheels shrieked against the shiny lino and I moaned at the sudden speed as she rushed me down more corridors to my room. I could hear my parents' footsteps behind us as they hurried to keep up.

In the room were four identical beds, and the empty one with the
Welcome Em
sign, courtesy of a thoughtful friend, was clearly mine. The nurse briskly lifted me into it, saying, “Best if, Mum and Dad, you leave and let Emma get used to her new room.” Mum's eyes welled up with tears and she kissed me on the cheek. “See you tomorrow, my Em,” she said reassuringly. Dad put his hand on my shoulder, squeezed it and got out his keys. They left.

I felt as though I had been thrown into gaol. The nurse whipped off my shoes, threw up my bed's sides and said, “Rest now, Dear. Dinner's at 5pm and your buzzer's here should you need anything. You'll meet your therapists tomorrow.”

After the hotel-like accommodation in the Sydney hospital, I was now forced to share a room with three other patients, strangers. Strangers who would be apparently returning soon, but I wasn't particularly looking forward to meeting. All alone for the moment, I scanned the room through the thin blue nylon curtain that was my only privacy. The furniture was cloned – same beds, same bedside tables, identical narrow chipboard lockers. At least I was next to the window, but the view was far from inspiring – a bleak car park and in the distance an industrial brick chimney. I felt abandoned in an alien world.

Resigned, I collapsed back on the hard squeaky pillows. With no distractions, I felt forced to focus on my situation and all the things that were not right or fair about it. Endless negative issues circled in my damaged mind. I felt like I'd been dumped at Talbot's doorstep, a complex machine with no manual. The discharge summary from Dalcross provided the new Talbot staff with a ‘problem list'. Now it was their job to write the manual.

Emma's new home at Talbot, Melbourne 2005.

At Talbot my days changed dramatically. In my Sydney hospital I had been allowed to stay in bed in my pyjamas and everyone did everything for me. My world was now controlled by the routine of the hospital. Each day started with a painful burst of light as Nurse Fran threw up the blind and wound up my bed, bringing my crooked prone body to a crooked seated position. Breakfast in bed, once a treat, was now a chore. I was given a shaving mirror to help me eat. It was embarrassing to admit that I'd even forgotten where my mouth was. Looking at my reflection, though, was enough to put me into famine mode! Attempts at feeding myself were hopeless. Puree everywhere but in my mouth. No wonder my shower was always timetabled after breakfast!
I needed a baby's plastic floor protector.

Fran arrives, quickly transfers me to the commode chair and wheels me into the toilet, then rushes off without realising that the chair hasn't been positioned right over the bowl. Like a little kid I totally miss.

I reach for the buzzer, buzz, and wait.

About ten minutes later I buzz again. Fran flies in out of breath, “Sorry Em, another nurse needed a hand. Are you finished?”

“Yeaaahh ut,” I try to let her know what's happened. She looks down and sees the wet floor.

“Oh dear. My fault Em, sorry!” She pushes me out of the way and mops up.

“OK. Now for your shower.” I'm wheeled into the shower recess and rapidly lathered and hosed down. The commode chair is pinching my skin but I can't tell her. I can't even move to cover myself. I'm acutely aware of how vulnerable I am. The reality of my new helpless self hits me hard, like a slap in the face. I'm coming down way too quickly from the medication cloud I've existed in since the operation.

Fran dries me off and struggles me into the clothes she's pulled from my drawer – knickers, bra, trackies, Ted pressure stockings and shoes. I feel I'm being forced to squeeze my new disabled body into my old grey tracksuit.

I try to let her know telepathically that she's forgotten to do up my bra, but she fails to get that message. She then adopts a ‘will you marry me' position and attempts to cram my left foot into my right shoe. She stops, huffs, gets down on both knees and tries again.

Another voice calls for Fran's assistance so I'm wheeled shoeless to face the wall rather than the window and instructed to wait. I still have to have my teeth cleaned and shoes put on before Susan, the porter, comes to take me to my scheduled assessments for the day.
I'm dead tired already.
Even though I feel as though a concrete fatigue fog is squashing me, I don't want to rest. I want to start fixing my body.
Now
. If I could physically throw a tantrum, I would.

Talbot consisted of two different areas, the therapy area where I was to be ‘fixed' and the ward where I would sleep or rest and wait in between. Susan manoeuvred my chair easily with one hand across the glass-arched walkway that bridged these two new worlds. When my wheelchair tyres left the green lino floor of the ward and were pushed onto the parquetry floor and more natural light of the therapy wing, my spirits rose. Past the café and with a ‘knock knock knock' I was delivered like a parcel to my first assessment. Before any therapy could begin I had to have my ‘admission level of disability' determined by a swarm of new therapists from each discipline – from physio to OT to speech therapy to psych.

As a therapist I knew that a strong therapeutic foundation was crucial to elicit a person's strengths, motivation and sustain their performance. But as a patient I suddenly felt myself very closed to those who robotically assessed me, assuming that I, the patient, would have nothing to contribute to the process. I needed to feel valued before I could reciprocate and build any rapport with them.

It seemed that not one of my newly acquired ‘stroke-induced' deficits was straightforward. The problem list was way longer and more extensive than I or they had thought. The bleeding in my right cerebellum affected the right side of my face and the left side of my body. I couldn't sit or stand upright, so restoring my balance was a priority. Bed or wheelchair-bound, I now existed in a topsy-turvy spinning world where everything was double. As well as feeling perpetually dizzy, any movement was made worse by the nerve damage from the stroke. My left side felt like it had been dipped in hot wax, lifeless and stiff but with raging nerve pain trapped inside. As I couldn't close my right eye, it was taped shut to allow me single vision. The right side of my face drooped. I had no sense of my body in space, where my mouth, eyes or fingers were. Basically at this point I couldn't sit up, turn my head, point, blink, talk or eat anything other than thickened fluids.

These new deficits made me disabled, trapped and categorised. I felt handicapped, an aberration. But at the same time, I felt ashamed to admit that this bothered me.
As an OT surely I should've been familiar with and accepting of my situation?

I was eligible for almost everything on offer at Talbot, from physio to psych. A rehab timetable was plastered above my bed, with sessions beginning every day at 9am and going through till 4.30pm. The timetable included regular rest times but I didn't want those. I was there to work.

Chapter 21

Therapy Begins

I started the various sessions full of optimism and high expectations, with no idea how slow and repetitive the process was going to be, or how emotionally draining. It was fairly naïve of me, considering I was a therapist, but probably indicative of the gulf that exists between the mindset of the therapist and that of the patient.

To get to therapy, I had to get my wheels sorted. That was the job of the OT, Felicity. I had to be fitted for a special high-backed wheelchair to support my weak neck, upper limb and back muscles. The OT also had to give me a shower assessment, a standard tool used by my profession to find out a person's capabilities and areas to be improved. I'd done plenty of them but had never been at the receiving end. Sitting naked, propped up in a shower chair, in front of a colleague my age, was deeply humiliating.

“Try to sit upright,” Felicity said encouragingly as I sat slumped under the running water. I knew she was trying to help but I just felt like slipping down the drain hole.
Had I really put others through this excruciating experience? Surely my profession was there to empower people not disempower them?
After proving I couldn't shower myself I then had to prove I couldn't dress myself. Even though it was patently obvious I could do nothing for myself at that stage, the medical bureaucracy required these assessments to be done before any therapy could proceed.

Once that was over I could begin my twice-daily physiotherapy regime. The physio area was a huge, cold room like a carpentry workshop, bordered by rows of blue vinyl beds where patients were being worked on. I'd imagined I'd be running in no time, but the reality was I'd be spending my first few months there on the sidelines.

“Today we're going to work on straightening you up,” my physio, Georgie, announced enthusiastically. My nickname was ‘Lamana Banana' because even when I lay flat I curved like a banana. One of the first exercises involved me lying on my back while Georgie coaxed my bent body into a straight line. It was a weird and quite frightening feeling. Being curved felt safe.

Then she rocked me from side to side to give me a sense of what it would feel like to sit up. The bleed had caused muscle amnesia and these small slow movements were a way of rousing them again.

“Blink, Em,” Georgie would say. I heard and understood, but it took at least five seconds for my right eyelid to obey. Even then it would only go down halfway, like a broken blind.

“All done today, Em.” Suddenly the 25-minute session would be over. I couldn't believe it. Progress was agonisingly slow. All I'd done was blink and try to stretch out straight, and I was exhausted. As I sat waiting to be returned to my room to rest, I watched other patients enviously. Some were grasping their way along the eight-metre practice set of parallel bars down the middle of the room. That was where I wanted to be, but I was beginning to realise what a long road lay ahead.

Between sessions I was wheeled back across the glass bridge to the other side to rest. These sleep times to ‘rest and heal' were far from restful. My roommates had visitors or the cleaners banged and crashed about. I'd lie awake, unable to move to toss and turn. I'd often head off to the next session feeling grumpy and irritable, and worried that I wouldn't perform at my best.

Speech therapy was held in a tiny shoebox of a room. It overlooked Talbot's central garden courtyard but
my
view was of my eye-patched self. My wheelchair would be positioned by Nancy, my therapist, in front of a large mirror so I could track my facial movements. In the early stages, though, there were no movements to track. I had to relearn how to move my frozen lopsided face and wake the muscles involved. I had no sense of where anything was – my tongue, my eyes, my mouth. Communication consisted of trying to move my face in a meaningful way and emitting muffled sounds. The voice that did escape at that stage was monotonous and incomprehensible, and came out startlingly loud or invisibly soft. I sounded like a robot with its volume dial out of control.

The first few speech therapy sessions didn't change much. I would spend the whole session repetitively trying to poke out my tongue, or pursing my lips together and then stretching them to produce the sounds
oo
and
ee.
It was bad enough doing such things in front of Nancy, but at one of these sessions a male student was invited in to observe. They did ask my permission but I could hardly refuse, since he was already standing there, plus my ability to say “No” was pretty compromised at that stage. I didn't feel as though I had a choice. As a therapist I knew it was standard clinical practice to let students observe, but now I realised how disempowering and embarrassing it was being on the other side of it.

Measuring my smile (with an Ikea tape measure) was another part of the routine. Even though after weeks it was still hardly a smirk, every millimetre I managed to stretch my mouth elicited a cry of encouragement from Nancy.
Baby steps!
At least I had moved on from the communication board I had relied on at Dalcross.

Gathering feedback, whether it was recording my voice, tracking my handwriting, taking photos of my face or videos of my walking became a huge motivation to me. In spite of the slowness of my recovery, it helped me track small changes and show others that I was still improving. I knew too as a therapist that seeing this feedback would be great to show my future team. Showing that I couldn't speak or hold up my head through real recorded examples would be much more powerful than just using words to describe my recovery process.

An early therapy I was really looking forward to was ‘hydro' or warm water therapy. I secretly clung to the hope that the water would wash away my disability and my balance would be miraculously restored. First, though, I needed to improve my breathing and swallowing, as my medical team feared I would aspirate if I entered the water. So as well as my speech regime I was sent to music therapy.
Yep, I had to sing to swim.

Music sessions were held in an incense-fragrant room, full of instruments, colour and comfy cushions. The window looked out on a pleasant view of gum trees. In my former life as an OT I'd regarded music therapy as a bit of a ‘time filler' but I soon learnt these sessions have surprising physical and emotional benefits.

My body had basically forgotten how to breathe and at first I could only hold a note for less than a second. The music therapist, Tina, would sit at the piano and play a note and sing and I would try to copy her. I sounded awful and I mentally added ‘can't sing' to the long list of what I
couldn't
do, but slowly the exercises restored some breath control and endurance.

At the end of a day of therapy, I would feel exhausted but still had a mass of ‘homework' to do before my visitors arrived. It wasn't compulsory, but I was determined to improve, whether it was working on my balance by standing at my cot-sides in five-, ten- or 15-minute intervals, or practising syllables in speech.

After a few weeks of therapy I was scheduled to attend my first family meeting. In my previous role as an OT, such meetings had been a weekly occurrence, so I felt I knew what to expect. But being the focus of the gathering was a big eye-opener for me.

Basically, my new team and parents gathered sardine-like around a large wooden table. I was wheeled in and positioned at the top. A doctor to my left led the meeting. Clockwise we then heard from the other eight or so staff (and their students) about my progress, where I'd come from, and the numerous goals of each discipline. It was a cruel reminder of the devastating spot I was in and the limitations each discipline had put on me. When it came around to my parents they were asked if they had any questions. ‘No' is all they said.
Why had I attended? No one asked me for my thoughts. What a wasted opportunity.
My entire team had been together in one room, the ideal chance to brainstorm meaningful goals together and draw on my strengths and values to achieve these.
Surely my treatment plan should be based on a list of what I could do?
My family could have also been educated then and there and perhaps they too would've felt included in my team and empowered to care for me in the future.

Although I started the various therapy sessions full of optimism, I discovered new disabilities every day. The more activity I did, the more disabilities appeared. They were made worse by my immense fatigue and the growing frustration at my slow progress. I was finding just how disabled my body really was.