Reinventing Emma (15 page)

Em's supporters organise a fun run ‘Run to Gee' Melbourne, September 2005.

An information brochure distributed to those who participated read:

“Em loves to run and months before she was diagnosed with an AVM, she trained for a half-marathon – but this would pale in comparison to her preparation for the next marathon she would be running. At just 24 years of age she prepared her will and said goodbye to all those that she loved. Though she recovered from surgery, she spent months in hospital learning to walk again. Not only did Em continue to be incredibly selfless in supporting her friends and family through their own distress but, as an occupational therapist, Emma created the possibility for herself to be ‘inspirational and courageous' in her recovery and to one day return to work as a better and more client-centred therapist. We continue to watch in awe as Em runs the biggest marathon of her life. Every day she teaches us not to ask ‘why me?' but ‘how can I best get through this?” Only a few things in life teach us that, which is why we are running … a small marathon of thanks from us all … We want to motivate Emma in her recovery by showing her just how much she means to us and how inspired we are.”

Although at the time I wasn't well enough to attend the event, to this day the swarm of peoples' efforts is proof of the support that has fuelled my recovery.

In fact, after getting to know fellow patients, like Dean, I realised how lucky I was to have family and friends around. Dean was from New South Wales and had been admitted following a stroke on a business trip to Melbourne. He looked like Mr Bean – pasty white, hairy skin and dark eyes. One afternoon I saw him sitting peering vaguely out the dining-room window. I had 15 minutes before my visitors arrived so I decided to wheel over.

“U 'K?” I mumbled, thinking he was probably wondering how a mute, eye-patched young girl on wheels could help. I can't talk very well, but I can still listen, I thought.

“Not really,” he said, resting his chin on his right palm. His left arm was flaccid and lay awkwardly across his thighs. “Basically I've been working crazy hours. It was lucky I had my stroke on a business trip. I live alone in Sydney and I doubt my secretary would check up on me.”

“Fam mi ly?” I asked haltingly.

“My sister's in Brisbane and we're not that close. No other family. My parents passed away years ago.”

“Frens?” I posed hopefully.

“Nup, not really.” His chin dropped further to his torso, seemingly heavy. He slowly shook his head from side to side, fixing his teary eyes in the direction of his knees.

I wheeled my chair closer and placed my hand on his sunken left shoulder. We sat in silence until my friends arrived and I sheepishly left.

Although I was lucky to have so many visitors, an awkwardness hung in the air. We were all tentatively trying to work out our new roles. Many of my close family and friends are from a medical background and, because of this, the hospital team tended to assume they would know how to deal with my recovery. But my supporters found it increasingly hard to emotionally detach themselves from what was happening to me. They couldn't be merely observers or advisors.

My stroke had changed everything. I was not the same person or friend in the relationship that family and friends had committed to. Now they were also my carers and were torn between that and who they'd always been to me over the last 24 years.

As my mum wrote later, “I needed to learn new ways to relate to my daughter. She didn't want pity or patronising behaviours yet I pitied her and I patronised and I did things for her that she wanted and needed to do for herself. I was treading on eggshells and yet neither of us wanted that at all. I spent my time with her
doing
the many things that needed doing when often what she wanted/needed more was for me to sit with her, to listen to her, to share with her.”

As time passed, I sensed the dilemma I had forced upon those close to me. I tried to be positive and strong for their sake, but at the same time felt utterly terrified of losing them.
Would they stick around when they realised that the ‘Old Em' wasn't returning?
I wanted to reciprocate their acts of friendship, but being physically trapped, this was near impossible.

It became easy to hide behind my eye patch. If I was tired, people would understand. I had plenty of physical reasons to support my fatigued state and excuse my grumpy behaviour. I admit to often blaming those close to me or finding fault in what they did, merely to escape responsibility. I daily questioned their amazing investment in my wellbeing. I tried to dismiss these thoughts and in those ‘survival days' I became reliant on others' comments to get my depleted self-esteem through each day.
Were their words just said out of niceness or habit? What were they really thinking?

All I longed for was to be my old independent self, but I stubbornly wouldn't take therapists' advice on ways to manage my pain and conserve my energy. Of course I knew the importance of such strategies, but I wanted to keep doing things the same way I'd always done them. After a full day of pushing through my exhaustion I would just fall in a frustrated, irritable heap.

Emma resting after therapy at Talbot with her daily visitor, Morgan the dog, October 2005.

Rehab became a perilous journey where I was forced to spend each day working on my disabilities while stubbornly refusing to accept them, or to contemplate any reference to stroke.
I was an AVM victim. Strokes were for older people, unfit people and unhealthy people. I was none of these.
Volunteer stroke survivors would come and speak to us about their experiences and how, “having a stroke was the best thing that had happened to them”. I'd be forced to observe my invited family members' relief at the stroke survivor's words. I was glad someone else could give them hope, but I just felt ungrateful and alone. I didn't want to identify with this man, or any of the other stroke victims I found myself with.

I was silently consumed by negative, self-pitying thoughts. In my mind I was there because of an unfortunate accident, whereas I felt that in some way their situations were self-inflicted. They smoked or lived unhealthy lifestyles, like my roommate Sandy, a peroxided-blonde in her mid-40s. Her husky voice was a dead giveaway that her ‘ciggies' were an essential part of her daily regime. Although she did add life and energy to the room, when she limped out on her stick for ‘smoko' I would inwardly struggle. I hated that she would return to her previous unhealthy lifestyle smoking 50 a day and I also confess to being jealous of her early discharge from the ward. She almost ran out of the place, something which, after months of rehabilitation myself, I was still unable to do.

The truth was I was totally unprepared for the emotional impact my stroke would have on my life. Although I still had my marbles, the endless physical disabilities that emerged, and the frustration of not being able to communicate meant that these marbles only smashed around uselessly inside my damaged head. I clung onto the idea of returning to my old life. But as time went by, the realisation sunk in that my past identity had vanished when I'd had my stroke.
Everything I once was good at was now gone. I'm useless!

There were days when I just didn't feel motivated to start another day putting my disabled body through the paces. But on these rare occasions, I struggled to stop and grieve, as I felt bombarded by my team. They'd ask probing questions. “Why don't you feel like going to physio today, Em?” or suggest antidepressants to mask the emotional hindrance they could see was affecting my physical progress.

To escape their hassling and to avoid being prescribed medication I dreaded, I would go to the scheduled session, but not be present. Just extremely frustrated that I couldn't give it 100 per cent. I felt as though I needed a break.
Surely it was normal for me to grieve
. Acknowledging and balancing my emotional and physical progression was becoming increasingly difficult.

I realised the only way out was to rebuild my confidence and somehow find a new identity.
I had a choice
. I could sit and sulk or do what I was there to do – get rehabilitated.
I had to choose to be proactive in my recovery rather than reactive. I had to change my attitude.

Chapter 23

Mid-therapy – Baby Steps

At the far end of the room was a mirror and my bent-over reflection stared at me as I inched along. It was meant to be there as a form of feedback, to correct my posture, but it was hardly motivating.

After months of physio, I was out of my wheelchair and walking with the aid of a frame. But it was no quick transition. I had to practise with 12 bricks in my frame's basket, to stabilise it and weigh me down. One by one the bricks were being removed as my body control and endurance improved, until I could hold my body up and wasn't as much of a ‘Lamana Banana' if I concentrated.

One day Felicity, the OT, and Georgie, the physio, worked together and we headed outside so I could learn to negotiate uneven surfaces with my frame. I'd been looking forward to getting out into the fresh air and the sun, but after months of life behind glass, it was a bit daunting. There were sticky flies, loose pebbles and even the wind threw my delicate balance. In spite of the obstacles we were all having a lot of fun, even though laughing made me shake and added an extra challenge to my already wobbly walking. Felicity swatted flies and held my billowing top down, while Georgie guided my frame over speed humps.

Having different disciplines working together like this was a treat. Even though a team approach is seen as ideal in theory, the reality of the medical world means therapists generally tend to work within the ‘silos' of their own disciplines. As a patient that day I felt at the centre of their care, that they were working together
with
me rather than
for
me.

My music therapist, Tina, also sometimes teamed up with my physio. In music therapy I'd graduated from scales to singing along (badly) to songs. Tina encouraged me to choose songs with lyrics that meant something to me. Missy Higgins' ‘Nightminds' was a particular favourite. The words
I will learn to breathe this ugliness you see
still give me chills. The lyrics I heard somehow helped me reconnect with and express trapped emotions. Relearning to sing was also curiously effective in restoring my speech patterns. Music therapy opened up a whole new world for me. Music became a great comfort and another source of independence. Listening to my iPod out of therapy hours became quite an escape.

When Tina came to the gym she would play guitar as Georgie and I marched to the rhythm. While it was a little embarrassing being serenaded and caused a bit of laughter among other patients, moving to a rhythm definitely helped my walking. Once again, two therapists working together felt far more effective than seeing them individually.

At speech therapy I would sit in front of the now-familiar mirror while Jacqui, the speech therapy assistant, sat to one side with her clipboard on her lap. I was now used to watching my own facial gymnastics and had more control over my tongue and jaw. My speaking was slowly becoming more comprehensible through repeating individual syllables over and over.

“Puh, puh, puh.” I'd been concentrating furiously on the list of sounds in front of me and Jacqui's facial examples. I'd finally forced my unwilling lips together. She clapped. “Excellent! Now let's try to put it in a word. See if you can say
Peter Pan
, Em.”

I appreciate her enthusiasm but I feel like I'm in Playschool. The words are meaningless.

“Eeter Aan,” I say. The lips won't behave this time. It comes out all wrong.
Great
, I think to myself sarcastically.

“Put your lips together like this.”

I watch her and try. “Eeter Aan.” My second attempt is just as bad.

“That's better,” exclaims Jacqui, though we both know it was exactly the same, if not clumsier than last time.

Tears well up in my left eye, but I don't have time to mope.
I have 20 minutes left to get my p's sounding like p's.

“You're tired aren't you, Em?” says Jacqui sympathetically. “A few more and then we'll finish up.”

I bring the photocopied list of words closer. “Eeter, aan, paan.” The lips come together at last. “Paan.” I stop to catch my breath and we smile at each other triumphantly.
Man, I've just said the letter P and we're both acting as if I've just finished a 20-kilometre run!

Jacqui places a red plastic folder on my lap, full of ‘p' words to practise saying, “Only if you feel up to it, Em.”

Months of daily speech therapy and weekly music therapy had my swallowing mechanisms working better and at last I was ready for swimming. My brand-new black one-piece bathers and Speedo goggles could finally be christened.

At hydro, instead of diving or bombing I would wait in my wheelchair behind two supervisors. Here, no one worried about body shapes or bikini lines. Depending on your ability, you were either lifted by a machine or supported to walk into the murky warm water. The advantage of hydro was that in the water balance wouldn't be a problem and I would be able to do things I couldn't possibly do on land. I'd been looking forward to this moment for months, and I was devastated to find I couldn't even stand upright in the water. Its warmth just heightened my fatigue and my nerve pain, making the left side of my body feel dead and heavy. Instead of feeling buoyant and free, I felt like a ship's anchor.

I was destined to spend months walking slowly along the pool edge or clutching a therapist. By the end of my time in hydro I could move alone into the deep end and float, huge achievements in my now limited realm. Water therapy was slow going but very important. Being able to move my limbs freely gave me physical confidence and restored a sense of freedom and independence.

OT had begun badly with my naked shower session. But now I'd built a good friendship with my therapist, Felicity, and was fully dressed. These sessions were scheduled daily after lunch and involved small physical tasks designed to improve my motor skills, dexterity and function.

OT was the most challenging therapy for me. More than in any of the other therapies, I found my role reversal hard to accept. Despite Felicity's understanding, it felt really wrong being a therapist in therapy. My professional knowledge made me over-analytical and a little cynical. I knew the clinical reasoning behind these activities and their role in returning a person to some kind of meaningful activity, but with my patient's eyes I saw how demeaning and monotonous some tasks could be.

At times a peg-board was placed in front of me, and I'd be left to move wooden pegs from hole to hole, or I'd be given a pile of handwriting sheets and asked to trace letter after letter as if I was a Grade One student. The best sessions were meaningful, little projects like making chess pieces and chopping boards. I enjoyed relearning how to bake and assemble gingerbread houses, which I'd always done pre-stroke at Christmas. Here, I was working with another person and there was an outcome, something to show my visitors to prove my daily therapy efforts were worthwhile.

But, as in all sessions, things moved far too slowly for my liking. I became very frustrated in OT. I hated my ‘old-lady' walking frame; I called it Anchovy because I hate anchovies. Rather than wait for the OT to go through all the red tape of organising a funkier new frame, I arranged it myself. I also began to design my own therapy, trialling strategies to adapt to my new physical self. One example was the use of a glove to minimise the growing nerve pain in my left hand. Possibly these strategies were ones that Felicity had already mentioned but I hadn't been ready to adopt in my unreceptive frame of mind.

Felicity patiently discussed future goals, like my intention to return to work and move out of home. I have to admit I was never fully present in these conversations. I was not prepared to be taking advice from someone in my own profession. I remained in denial that life outside the Talbot walls would be any different to the way it had been. I continued to stubbornly believe that I still had my old job, an extremely supportive workplace and my silver manual car waiting for me.

Over time, Felicity managed to thread purpose, meaning and value back into my life. Initially these discussions were quite daunting and made me think about the realities of my future.

“So Em, how are you feeling about leaving here and going back to work?” Felicity asks.

“K,” I'd lie, resting my head on the back of my high-backed wheelchair so it didn't wobble so much.

“So what are the bits in your old job that'd be a bit tricky for a while?” Felicity gently probes.

My mind fast-forwards through my old typical working life as an OT. I skip my early run and get straight to getting to work. Driving there. Walking from the car park to the department. Talking. Typing … and that's just the admin stuff! How could I make a hand splint to help a patient to grasp when I struggled using my own hand and no longer could feel the hot temperature of the wax? How could I lift and carry a piece of equipment to help them?

“Every bit,” I grunt, resigned.

“OK, let's brainstorm together what you love about your job and go from there …” Felicity says enthusiastically, poising her pen to catch the list.

As time went on, the holistic and empowering nature of OT rekindled my love for the profession. Today, I am so grateful that Felicity put up with my cynical, stubborn behaviour.

The various physical therapies began to show results, so I was booked in for ‘psych'. One of my fellow patients, Ida, who had become a kind of grandmother figure to me, had survived a stroke during an operation. She was very wary of psych sessions or anything of that nature and was horrified when she heard where I was going. “It's ridiculous. You've had a stroke but you're not loopy,” she huffed.

Although I didn't feel ‘loopy', I understood the importance of addressing the emotional issues that piggybacked any physical ones. Off I went to the fourth floor, where the seaweed-green carpet led to the quiet, dark and musty psych department.

Denise, my psychologist, was a softly spoken, middle-aged woman who seemed nervous in my company. I didn't have these sessions often, and when I did I largely felt like a zoo animal as she watched me, trying to elicit the trapped emotions that my speech wouldn't allow me to unleash.