Reinventing Emma (19 page)

Chapter 29

On the Shelf

Now that I had my own place, I naively assumed that I could finally resume my previously full social life, but I soon learnt that going out with my friends was not the same anymore. The gulf between our lives was wider than any of us wanted to admit. I could no longer relate to their endless discussions about work, paying off mortgages and boyfriend issues. Rehab was the only issue many would ask me about. I think they thought that ‘normal' topics would elicit too much grief and they perhaps didn't want to remind me of what I no longer had. To make things worse, in unfamiliar surroundings my physical limitations were more noticeable. Even when I couldn't hear their conversations I mirrored others' nods and laughs to seemingly fit in for their sake, but I'd hold in my tears
. They were drifting away from me.

Many of my friends were getting engaged, married or were pregnant, so my social life became about celebrating their milestones. Big social events were a nightmare. At times I'd be left by my walking frame in the same spot the entire night. Often I'd be standing next to no one, forcing myself to aimlessly flick through my phone as if I was busy. Or I was left sitting beside my friend's grandparent, who complained about the blaring noise, their hip pain and the youth of today. Usually, in my tired state, I would become increasingly frustrated, enviously watching my friends as they danced and drank. I left early, after speeches, my sensitive ears still ringing three days later. It didn't help that I was aware that such celebrations for me personally were unlikely.

Diary excerpt 24th february 2007

Tonight my friend came over. I said something like, “If I never marry, I'm going to buy myself a diamond ring,” secretly hoping she would say something reassuring like, “Em, of course you'll marry!” But the “Good idea” response I received was hard to swallow.

If I thought going away with my family was frustrating, holidays with friends were way more difficult. Although the idea of a ‘blobby' weekend away with my girlfriends sounded great, my initial efforts to appear normal and prove to my travel partners and myself that I was low-maintenance, failed dismally. Out of my familiar environment, I was only more reliant on others for help. For example, just showering was a huge task for me. My parents were mindful of this and would set up the shower for me. But this is an area that I chose not to flag to my friends, seeing it as just an added hassle. Instead, initially I tried to do it alone. With no rails or accessible seat in the shower, I opted to sit on the cold tiled floor. Also, being unable to decipher hot from cold water, it was usually safer to either not shower or have a freezing-cold shower. Eventually I'd emerge, exhausted with un-rinsed soapy hair.

“Nice long shower, Emmy?” my waiting friends in the shower queue would say chirpily. I couldn't begin to explain how awful that shower had been. I'd want to cry all the water I'd just been fighting with.

I wanted to contribute in some way but they shut down any offers to help clean up or cook. “Just rest, Em, it's all sorted”. So I would just sit and watch, feeling more helpless and isolated. I became so frustrated and read their kindness as devaluing. ‘Blobbing' still involved tasks that I could no longer do, like beach runs, walks and table-tennis games. My friends urged me to accompany them, but I would often choose to sit on the sidelines if I went. Or I'd stay alone at the holiday house.

Back in the city, friends were aware that going out was difficult and often came to me.

My friend is arriving in 40 minutes. I get up stiffly and make my way to the fridge to retrieve the ingredients I'd ordered from Coles online. I plan to have our dinner ready on her arrival. But by the time I've chopped half a red capsicum and a zucchini, I collapse, utterly exhausted, into a chair and reluctantly text her,
“R U OK to cook? I have all the stuff but am zapped.”

The doorbell rings and my friend enthusiastically walks into my kitchen and finishes what I barely started. I lean next to her on the Laminex bench and shuffle items around, pretending I'm helping. Being upright keeps me awake. She senses my need to help, opening the tomato-paste jar and handing me a blunt knife, saying, “Here you go, Em.” She's on my right paralysed side so can't see the tears running down my left cheek.
I'm over this
. I want to be helpful but just feel in the way.
I should've ordered take-away pizzas.

Increasingly I felt I could no longer relate to my peers. At the same time I foolishly believed I had nothing in common with other people with disabilities. When another person, elderly or disabled in some way, would point out the similarity between us I would cringe inwardly. If I did see similarities with others they were never good ones, like identifying with my grandma because we both now had to walk with a frame.

Finding any commonalities seemed to only reinforce what I'd lost. Often I would just nod agreeably, silently feeling quite different. I longed to identify with people my own age again, and to feel the comfort of twin-ness I had once felt. But all around me my friends were heading off on adventures or getting married and I was finding it harder and harder to pretend everything was the same and I could fit in.

I felt stuck in No Man's Land. I reluctantly decided to attend my local stroke support group. As a health professional, it was very confronting to admit that I needed help, to have to identify with people that would've once been my patients. My first meeting with other stroke survivors was difficult. I was a lot younger than most of them and, despite sharing many of their stroke-related issues, deep down I craved to be among my own peer group. I definitely couldn't see myself playing bowls or singing in the local choir.

It sounds harsh, but I didn't want their company to limit me. I felt that they didn't share my motivation to integrate back into the real world. Many people, pre-stroke, had married, paid off their mortgages, had kids and were now retired. They appeared content to stay put. I was not. I felt that I had to keep going. I wanted to shed my new disability as soon as I could and move on. I refused to believe that wherever I went it would shadow me.

Chapter 30

The Daily Churn of Rehab

Two years on …

Instead of waking normally to an alarm, I am once again stirred rudely by the throbbing stiffness and excruciating nerve pain that now invades and pulsates around my body. Strange signals abound, from hand numbness to sharp dagger-like pains in my head or big toe, and cramping in my left hip and calf. A year ago, one of the many pain specialists said that I had to “acknowledge these crazy symptoms but not let them stop what you do.”
Easy for him to say.

But he was right. If I worried about every sign my body gave me, I'd go insane. After trialling a pharmacy full of pills to rid me of my nerve pain, I had chosen to stop taking pain medication. The tablets didn't seem to lessen my pain and just exacerbated my other problems, like my balance. By now I knew that moving my body helped, so I would choose to start my monotonous day of rehab early.

“Today is an awesome day,” I chant to myself to try to fool my brain, revving up my body before my dad arrives. He is driving me to one of my daily appointments to address, fix or prevent the worsening of my new deficits. I force a wonky smile, drop to the ground on all fours and crawl to my newly modified bathroom. After showering for six months in the disabled bathroom at my local pool, I have finally accepted my therapist's recommendations and succumbed to entirely modifying the place, levelling the shower floor and installing a shower seat and grab rails. I've even had a thermostatic valve fitted so I can't burn myself. My own warped thermostat means I can't feel the hot and cold on my left side, though I've learnt over time to double check the water temperature with my right side.

Dressing is slow as usual. I unbutton and rebutton my top three times before I get it straight, then make brekky. The effort of squeezing the runny honey bottle is too great. I resort to folding the burnt crumpets in half to save the energy of spreading.

Dad arrives on time, opening my blinds and carrying my bags. I also grab a pile of forms I need Dad's help to fill out, as I struggle nowadays to write. My right, dominant, hand shakes too much from the ataxia. Although I know what I want to write, the scribble is illegible, energy depleting and time consuming. So to save the frustration, I now type or delegate. Today I'll dictate to Dad in the waiting room.

“Dad, could you put out the rubbish? I'll just grab my shoes.”

Chuffed that I'm pretty organised by 9am, I opt to leave my walking frame and I wall-walk, adding to the other fingerprints on my newly painted white walls. I reach down to grab my boring flat shoes in the bottom of my cupboard. But in my confident mindset, for a split second I stupidly forget about my poor balance. I land awkwardly headfirst in a pile of my unworn heels.
Reality hits!

Dad hears the loud thump from the next room and finds me sprawled on the floor of my cupboard. “Are you OK, Em?” He is obviously distressed seeing me lying so still.

I don't speak. I'm unsure of what just happened.

“Are you hurt?” he asks.

“I don't know,” I answer, trying to figure out which direction is up. My entire body hurts. I feel like I've been splattered into thousands of pieces. I need a minute to regroup before I can work out which bit is missing.

In Dad's car there's a coffee waiting for me. After driving in silence, he double parks outside the hospital to save me the long hike, and gets out my frame, saying, “I'll meet you in about five minutes in Suite 124, Em.”

Inside I follow the speckled carpet and enter the lift. An elderly couple follow me in. My battle to manoeuvre my frame in the awkward small space is the ‘lift entertainment'.

“Can I help you, Dear?” the lady says, scrunching her face up like tissue paper.

“No thanks,” I say cheerfully but abruptly. I sense she wants me to explain my ‘disabled look' but I don't want to be late for my appointment. Besides, I don't feel like justifying my appearance to a stranger. Instead, I look straight ahead. At level three, I thank the bald man who uses his wooden cane to hold the doors open while I slowly exit. “Poor love”, the lady whispers loudly, clearly saddened by what the lift just spat out.

I slump into the extremely hard, torn vinyl chair. Dad joins me seconds later, book in hand, for the expected wait. I choose to sit in silence and not waste my eyesight reading the ancient magazines sprawled over the coffee table. I close my eyes, rest my head on the wall behind me and mentally jot down the many questions I need to ask my ophthalmologist.

Initially, wearing an eye patch to mask my double vision (diplopia) had been a temporary fix. But once released into my old life, I realised my distorted view of the world was not going to resolve quickly. Although I did daily eye-tracking exercises for months after my stroke, I still saw double and my left eye continued to flicker constantly because of the nystagmus. I also had no nerve supply to my right eye, so had difficulty closing my right eyelid, no sensation and no longer produced tears. When my eyes became too tired, I often resorted to wearing my pirate patch at home.

Forty-five minutes later the ophthalmologist quickly assesses my vision and concludes that my cornea is showing signs of irritation. He gives me more exercises to do, a pile of prescriptions to fill, and instructs me to increase my eye lubrication to prevent it drying out.
Another thing to add to my rehab regime. Great
. He warns me it's either that or resorting to Dad cling-wrapping it each night or, much worse, it being super-glued shut. At least in the quick consultation I've also learnt that my right eye's ability to track has improved.
Dad's wait has been worth it.

Dad dropped me home and Gavin, my private physiotherapist, arrived. I'd decided that these weekly physio sessions were the only way I could speed up my recovery. I wanted to be challenged now and knew that I had to be the driver of my own rehab for it to be effective. So I organised my own team. As well as the new dynamic physio, there was my sister-in-law, Rach, and my childhood friend, Em. They were all great motivators and with them I felt safe to challenge myself. Also, they would come to me, which meant I didn't have to battle with transport or sit in waiting rooms.

We established a goal. I would walk without my frame down the aisle at my twin sister's wedding. I was to be her Maid of Honour in April 2008. Although this would be incredibly taxing, it would mean I would look less disabled, so it was a price I was willing to pay. Now I had nine months to make it all happen. Same length as a pregnancy, I couldn't help thinking.

Today my physio convinces me to go beyond the safety of my unit. I walk 100 metres up the street with one crutch, tackling uneven surfaces, wind and leaves for 20 long minutes. On the way back he asks me not to speak, and the walk only takes half as long. We spend the remainder of the session crossing the road back and forth and stepping up and down the curb, over and over again until my brain is so foggy with fatigue my body can't physically perform any longer. He senses my frustration and tiredness and says, “Good work, Em. Let's go inside and chat about where to go from here.”

Returning to the quietness and safety of my unit, I sit in my chair to support my wobbly, tired head.

“What terrifies you most, Em?” he asks, reaching into his backpack, grabbing a pen and note pad.

At Talbot I would've been unable and unwilling to answer this question honestly.
“Everything … I hope that note pad is big,” I laugh.

But he just looks at me seriously and poises his pen ready to catch my list. I close my eyes and recall all that I now avoid. “Trams, crossing roads, changing direction, talking when I walk, stairs, carrying things, going downhill … Oh and then there's what I find hard … um assuming a split stance, sitting or standing, moving my arms and not causing my head to wobble.”

He keeps writing and nods.

“That enough?” I ask.

“Yep, gotta go, Kiddo,” he says, zipping his backpack up and throwing it over his shoulder. “Focus on the long term; let me worry about the short term,” he says, locking the door behind him, leaving me feeling my rehab future is in safe hands.

For the next nine months my days were full, practising stairs, walking back and forth on the flat spongy cricket pitch on the oval opposite my place, swimming laps or doing Pilates. Also in my spare time as a lady of leisure I joined my local gym and began a weights regime along with a few aerobics and spinning classes. I'd stand at the front near the mirror and rail, trying hard to keep up with the rest of the participants. The different sequences were trapped inside my head and interpreted by my body in a delayed, uncoordinated, wobbly way.

A few months into this regime I began to experience the yo-yo nature of rehabilitation – from stroke survivor to stroke victim back to stroke survivor. It was overwhelming to realise the possibilities I'd opened up by forcing myself out of my comfort zone. I could now walk a short distance unaided on a flat surface in a rigid robotic way. But while walking like this I couldn't give eye contact, move fast or carry anything. Mentally drained, half of me squirmed at the future work I'd created. But the other half was so excited.

At Bec's wedding I almost achieved my goal of walking down the aisle without my frame. I needed to link arms with another bridesmaid. It was a fantastic day, but my elation was short-lived. After all those months of monotonous daily exercises, not quite reaching this milestone left me unsatisfied.
I probably looked more wobbly than usual in my attempt to not fall flat on my face!
Despite everyone's praise, I felt alone with my unfulfilled dreams.

The big day was over. My twin sister departed on her honeymoon adventure and I felt left behind. I'd worked so hard towards that day and I now felt as if I had no direction, no purpose. I kept going with my rigorous routine, but without a specific goal the effort didn't seem worthwhile.

I was slowly beginning to see the domino effect that the intense rehab was having on my other deficits. While I could walk with a stick now, it triggered my left arm nerve pain, led to sleepless nights and heightened my fatigue, fear and frustration. As a very active person in my former life, I hated that I couldn't perform at the same level.

My motivation gradually flagged and soon my regime began to fall apart. It was taking too much of a toll on my life.
Everyone around me expected me to keep improving, that I'd now throw away my walking frame and graduate to a stick.
I tried hard to fit in with those expectations, forcing myself to only use the frame when I was inside or alone, but the pressure I was putting on myself was too great. I was beginning to avoid my team because I didn't want to disappoint them or remind myself of what I'd failed to achieve. Had it become ‘their' goal rather than mine, I wondered. I began to question whether I was setting myself up for failure by being so focused on walking unaided.