Reinventing Emma (18 page)

Chapter 27

Taking My Disability on Holiday

A break from my rehabilitation seemed exactly what I needed at this stage, a chance to figure out my next move. But my first ‘holiday' with my mum, a friend and her mum was a huge shock for us all. It was definitely
not
the mother and daughter trip I'd envisaged. Not only did I need help to drag my unwanted disability around, I was unable to do the activities I'd previously done, like swim and sunbake. Plus it felt wrong to be travelling with my mum after years of holidaying with boyfriends and friends.

I was no longer a beach babe. Now I needed to fiercely grasp my frame, with no hands free to adjust my bathers when I had a wedgy. It didn't help that the weather was shocking and our hotel was evacuated on two occasions due to a dysfunctional fire alarm. Unable to quickly or safely exit, I had to rely on a stranger to help. He threw my vulnerable, pyjama-clad body over his shoulder like a sack of potatoes and ran!

Holidaying with my disability encroached on all areas of my life. Over those six days I tried to keep up and act like the Old Em, but my stubborn attempts to appear normal began to taint the holiday and the others' enjoyment of it. Fed up with trudging through muddy water on my walking frame, I succumbed to using a wheelchair.
Frame or wheelchair? What a choice. My companions had to either wait for me or push me.

I was there to relax and recuperate but it was difficult to rest, knowing how much work was ahead of me. Taking a break meant I had time to process all that had happened to me. I craved distraction, but the more I was out of my familiar environment the more I became aware of what I could no longer do. It was the beginning of the realisation that things became harder, not easier, on holidays.

I loved escaping my rehab life, but dragging my disability to each holiday destination was not part of the plan. My parents' beach house in Anglesea was a regular getaway where I'd discover new deficits and begin testing how I'd holiday with others…

I'm sitting in a comfy brown recliner overlooking the ocean. This spot is sheltered from the pesky March flies I can no longer swat, away from the hot sand that I can't run over, and the itchy heat that triggers my pain.
Here I am safe. Safe, but distant. Detached. I feel smothered by dependency.

Mum's earlier suggestion that, “It would be good for you to go for a short walk” is unthinkable. I want to go on a long walk now! The truth is, I want to go on a long, hilly run. I want to scream, “What'd be
good
for me is if my double vision, poor balance and speech impediment resolved!”

It's impossible to rest when I have so far to go to return to my pre-stroke life. I force myself to contemplate the consequences of not moving. Nerve pain plus!
I need to walk
. I heave my body up and stagger to the top of the staircase and abruptly stop. I am stuck here until my frame can be lifted down the stairs.
A baby bird that can't fly.

Mum and Dad's eyes track my steps.

“Where are you off to, Em?” Mum asks, sitting bolt upright.

“Just going for a walk to the beach,” I reply, looking straight ahead so they won't see my tears.

“Really, Em, that's a long way. Dad will drive you.”

“Ma, I want to walk.”

“David, can you drive Em to the beach?”

“Ma, I want to walk!”

“Oh OK. Want me to come, Em?”

“No,” I say.

“I'll just turn the oven off so the scones don't burn and help you down the stairs.”

Her assumption that I'll need her assistance makes depending on her that much easier. I'm sick of asking for help to complete every task, so I wait for the help that I don't want. I focus on standing upright and keeping my tears of frustration at bay.

Mum lifts my frame down the stairs, puts on my shoes, helps me zip my jacket and grabs my phone that I've left upstairs. I thank her in my head and then leave her reluctantly on the nature strip. She hugs her ribs anxiously to stop herself reaching out to adjust my jacket collar or to move the twig from my frame's path. “Are you sure you don't want me to come … I've got nothing else to do,” she calls behind me.

“Ma!” I keep walking.

“OK, if you're sure … See you at the beach, Honey. Dad and I will have the car there waiting for you.”

So I make my way to the beach. Rather than taking the uneven sandy scenic path that I used to run on, I take the safer road route.
Loose pebbles are more of a hazard than an oncoming car nowadays.
I sense Mum's distant presence but am not game to look back. Any slight change in my direction will throw me off-balance, and force Mum to run and rescue my collapsed body. The prospect of her hugging me tightly saying, “I thought this would happen, Darling,” fuels my determination to climb the ten metres up the hill without panting, stooping or tipping. As the hill becomes steeper I muster up more speed, picking up momentum so I don't roll backwards. When I turn the corner and am out of Mum's sight I allow myself to stop and let out a big long shaky sigh.

On that holiday I felt desperate. That day as I walked away from my parents I was so tempted to collapse into the gutter and just curl up with the rest of the rubble and howl.
If a car hits me, I'll secretly be glad. It's a good excuse for not finishing this walk.
Pretending that I didn't want to stay in front of the warm fire, or get a hug, was tough. I was secretly grateful that Mum tried to wrap me in cotton wool. Her motherly ways frustrated me, but the fact that she flagged issues out loud that I already feared, meant that I felt less alone. I could let another do the worrying for a bit. Knowing that the safety net was there, I was more willing to step beyond my comfort zone.

An hour later my parents are waiting in the beach car park. “How was it, Em?” Dad enquires.

“Easy,” I lie, adopting a semi-relaxed stance. I want to practise my walking alone. They reluctantly leave me on the sand.

A guy runs by – the beach run I long for.
This is too hard.
I give up practising my sand walk, fall in a heap and crawl only metres from where I'd been left. Sitting there, I remember the many beach runs and sand-dune sprints I've done – here, Zanzibar, Port Douglas …
I want to run over and dive fully clothed into the ocean. Fully clothed, not because I need help undressing but because I so miss the spontaneity of my old life.

My left foot is now blue and cold. Corpse like. I could walk on hot bricks with my left foot and not flinch. A new party trick. Fire twirling and ice sculptures are dated, I think bitterly. One thing I know is that I can't run barefoot to the ocean for a quick dip anymore. My brain now misinterprets the “Em, your feet are burning” signal and delays it. Then a few minutes later my body endures a pain response that lasts about eight hours.

My parents soon return to see the bum tracks behind me, like a snail. It's obvious I just crawled.
No footprints as planned.
I'm relieved to see them, but don't show it. I'm too exhausted to pretend I don't need their help. I let them heave me up, shake the sand off my legs and put me in the car.

When I was a teenager, going away with my parents was embarrassing. Now the roles were probably reversed. Although I was well aware that it was their holiday too, I didn't allow myself to exit my self-indulgent bubble to see the impact that my behaviour was having on them. It really was no holiday for any of us.

Chapter 28

Dependent Independence!

After 12 long months of living with my parents, I decided to begin looking to live independently. Although I definitely felt welcome to stay with Mum and Dad, I longed for my own space. Every Saturday, Dad and I spent time circling ads for potential units and then viewing one or two of them. It was impossible to do more than that in one day because of my turtle pace. Plus, many were automatically excluded. I needed a place without stairs, with carpet, wide doorframes, and close to public transport and my parents.

“That was good, Em. What do you think?” Dad would say after the inspection.

“The carpet's a bit of a weird colour,” I'd reply, having only concentrated on the floor in front of me because of my visual and mobility problems.

Basically I was reliant on Dad's opinion. Navigating each property was terrifying. I was worried about people's judgemental stares, about scraping the walls with my frame or leaving tyre marks on the freshly vacuumed carpet.

I guess Dad and I had a mutual purpose in our search. I wanted to get out and I'm sure he wanted to live again without kids. At auctions Dad bid for me and I waited in the car with a mobile phone to track whether I'd been sold my independence ticket. Eventually I bought a unit only a few suburbs away from my parents' home.

The chance to be independent was so exciting, but as I looked around my new, empty home I felt overwhelmed and alone.
Everything is trapped in big boxes that I rely on others to empty. I know where I want things put but can't move to put them there.
It was the beginning of a dark and growing feeling of dependent independence that I still lug around today.

My unit was a sanctuary, a place to sit in my chair in silence, recovering from the fast-paced life outside. But at first I found the many nights alone quite difficult. Even my Saturday nights watching TV documentaries with my parents had been at least a diversion, with the bonus of an amazing home-cooked meal. On my own it was so quiet and didn't seem worth cooking for one. Although I had a dog, Morgan, the golden retriever, he didn't come with me because he didn't fit in my small courtyard. That was my excuse, anyway. Really I knew I couldn't care for him and my parents soon gave him to another family. I felt I'd failed as an owner. Determined to prove to others and myself that I could care for another, I began researching ‘cat-like dogs' and found a golden cavoodle that I named Gilbert. Not being able to care for him in the normal way was initially quite confronting.
Was I depriving him of his puppyhood?
Friends reassured me, “He knows no different, Em.”

It was an odd kind of independence. I reluctantly accepted that I still needed help to care for Gilbert and myself. To be eligible for any service from community organisations, though, I had to highlight in each assessment what I could no longer do – something I preferred not to think about too much. After a number of depressing assessments I was allocated a regular carer from the council for a couple of hours a week.

The decision to let a random stranger invade my personal space was not easy. I confess that at first I was defensive, and critical of everything they did. Sometimes they'd begin tasks assuming what needed to be done. “Let's let some light in here and brighten this place up. It will cheer ya up,” they might say, pulling up the shutters that I had deliberately left down to lessen the glare that hurt my now ultra-sensitive eyes. Some helped themselves to a choccy or two from an open box, flipped through a book on my bedside table or told me to do things in a different way. While I felt happy to offer them a chocolate or adopt their suggestions, the forceful way they seemed to take over my own home made me feel bitter and resentful. Watching someone else do things that I once could do for myself just rubbed in the reality of my own helplessness.

It was even tougher when they did things their way, without considering the outcome. One carer made my bed, tucking the white sheets in firmly under the mattress. She failed to realise that I didn't have the strength or the control to untuck the sheets. That night when I tried to ‘post' my body between the tight sheets, I kneed myself in the face, resulting in a blood nose.

Another well-meaning carer hung my wet clothes out in the sunny courtyard to save electricity, assuming I'd just bring them in when they were dry. Once again I was made blatantly aware of the simple things I couldn't do. Not only was the step down to the courtyard a big obstacle, but taking the dry washing off, carrying it inside and folding the clothes was a huge effort. Besides that, it was quite risky for me in my unbalanced state. Often the clothes I managed to drag in looked like they'd been folded by a two-year–old.

Now I'm able to admit that the presence of home carers in my life has been invaluable and I am so grateful for their assistance. But initially it was a frustrating time for me. Independence was within my grasp but I didn't want to admit that I needed help to get there. Even my parents' help wasn't always welcome. Their regular visits dropping off coffees and treats, or doing the gardening or dressing my eye often made me feel more disempowered. I was particularly upset if they came unannounced. And yet in the middle of the night when my pain peaked, I often called my dad for advice and just to hear his reassuring voice. On hot nights he'd uncomplainingly collect me and take me back to their air-conditioned place. My parents were remarkably patient. I must've come across like a spoilt brat. I had lost the ability to make my own decisions, but I hated that I was reliant on others to make them for me.

I was adamant about still having some control over my new home. I refused to listen to therapists' recommendations that I purchase an electric scooter to replace the rusty manual silver car that I no longer could drive, or modify my bathroom and install rails around my new home. In my state of denial I continued to stubbornly believe that putting in ugly disabled equipment was a waste of money and unnecessary when I was on my way to a 100 per cent recovery. Accepting any modifications to my home symbolised permanency and disability confinement, and suppressed any chance of hope. Those around me would assume I was no longer improving. I don't think my therapists understood my state of mind, and often took my refusals personally. Of course their suggestions were right and in fact did seed the ideas. For example, after a while of getting around in cabs and trams and depending on lifts, I decided that a funky-looking scooter would improve my independence.

Sleep, or lack of it, was an ongoing problem. My pain now peaked at night, disrupting my sleep and then my monkey mind would generate more problems.
Will I have another stroke? Will I be able to return to work? Will I ever have kids? Will I be too tired and miss my physio session tomorrow?
I'd turn my bedside light on to read, trying to distract myself from the near-exploding pain that just seemed to escalate when combined with any worries.

On those sleepless nights I would often rewind my previous day to identify the pain triggers – the culprits.
Maybe it was sitting in a hard chair in direct sun at that café? Or was it when I rolled the supermarket trolley over my numb left foot?
I would usually conclude that it was most likely a combination of all of these things, the main contributor being the weather. I was now a human barometer, supersensitive to every small temperature change.

Basically my rewired brain was interpreting all signals from my warped body as pain. I was determined to find a cure for this, constantly dragging my raging pain-racked body to new pain specialists and trialling the latest pain medications. Factoring more medical trips into my week meant I spent my days sitting in waiting rooms with Dad, rather than alone in my new place. When I couldn't sleep I would helplessly wrestle the side effects of my new tablets – nausea, spinning and, even worse, balance. In my physically unpredictable state my confidence plummeted. I felt so helpless and utterly fed up.

The elation I had felt when I moved into my new home had proved to be short-lived. My newfound independence was replaced with a feeling of helplessness, reliance and doubt. I never envisaged that well over a year after my stroke, I'd still be so heavily dependent on those around me.