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.