Reinventing Emma (20 page)

Chapter 31

Searching for Purpose

Two and a half years after my stroke, although I had made a lot of physical progress, the prospect of spending every day of my life just doing exercises began to terrify me. I was tired of my life being about rehab and needed to find a new direction and contribute to the world again. I was still young, had a degree and was highly motivated.

I had begun a journalism course by correspondence and was doing voluntary work for Scope Victoria's online communities. Scope, a not-for-profit organisation that provides disability services in Victoria, was formerly known as the Spastic Society. As I couldn't easily physically contribute to my new world, I relearnt how to operate a computer and type, and started using the online world to communicate. This was a huge leap in connecting me to others and helping me participate in life again. My own experience of face-to-face support groups had been physically and emotionally taxing, and I knew there was little support available for young survivors. Now I wanted to ensure that others feeling isolated would feel supported as well.

With the help of Bec, who was still overseas, I started Shoestrings, a charity organisation designed to support the thousands of individuals who feel isolated as a result of a particular experience. Shoes and shoestrings are things we all have in common, so these created the concept of Shoestrings, its motto being “Sharing souls and tying communities together”.

The inaugural Shoestrings event was a photography exhibition held over a fortnight in an arts centre in Richmond. It involved communities impacted by stroke, whether it be a cleaner, neighbour, doctor, family member or survivors themselves, submitting a photograph of themselves with a pair of their shoes and writing a short summary about their experience and what they'd learnt. This was mine:

My Bachelor of Occupational Therapy, trip to Africa and long-distance runs did not equip me for stroking at 24 years of age. Nothing prepared me for life as a patient. However, now as a stroke survivor, I've found sharing has become the armour in my battle. ‘Shoestrings' as an organisation stems from all I've learnt from the power of sharing. I hope that Shoestrings enables others to feel less alone. With ‘shoestrings tight', I believe through sharing we can run this obstacle course together.

One hundred images were then enlarged and printed in black and white, with only the shoes in colour. They were then mounted and displayed on the walls of the exhibition space. Each of these photographs was sold and, together with ticket sales and a silent auction, we raised stroke awareness and funds for the National Stroke Foundation.

In the months leading up to the first Shoestrings event I was busy delegating tasks among all my networks to make the exhibition happen, with Bec helping from overseas. She broke down the tasks into realistic chunks, organised a Shoestrings team and sent through agendas and spread sheets to help us. She even liaised with the National Stroke Foundation on my behalf.

Seeing the incredible effort she had invested made me determined to do all I could to make it worth her while. I went along to small group meetings to encourage those impacted by stroke to submit their photographs and attend the event, and networked widely to get donations for a silent auction and generate ticket sales for the opening night. Promoting the exhibition was extremely daunting and tiring but fantastic for getting me out of my comfort zone and into the world again.

I wrote in my blog:

I spoke about Shoestrings to a ‘Coffee Bean' group today. I must admit, the fact that ‘coffee' was in the group's title made agreeing to speak a lot easier. I secretly hoped that they were all caffeine addicts and their morning Lavazza fix would keep them wide awake when listening to my monotonous soft voice. Ever since my stroke I've been quite keen to begin public speaking. My mum even borrowed a library book, Public Speaking for Wimps. However, sitting to read my talk in my Coke-bottle glasses with a soft, monotonous, unclear voice and maintaining little eye contact was a huge ‘no no' in the public-speaking world. Thankfully, I detected no nudges, snoring or sudden head drops. If I ever get into the public-speaking domain, remind me to get coffee companies to sponsor me!

Incredibly, as a surprise, Bec flew from London for the Shoestrings opening night. I was literally speechless, but had committed to giving a brief three-minute thank you to the 100+ people who attended. Although I couldn't speak very well, the response I received and the connection I felt with the audience was exhilarating. This was the elation I had missed since my stroke. At that moment I wished my ability to communicate was good enough to pursue my newfound love of public speaking.

Em's first speech at the Shoestrings opening night, 2009.

The day after the event an article was published in a magazine:

“Every now and then we see, hear or experience something that really makes us stop and think. Often these experiences are chosen to be kept to ourselves, however when I attended a very heartfelt and inspiring charity event early this week, I was so moved and inspired that I see no better way of sharing this with you.

Shoestrings
came from the experiences of Emma Gee, who is currently going through rehabilitation post-stroke after being diagnosed with a congenital AVM (arteriovenous malformation). (Shoestrings definition of AVM was that Em's brain was like a heap of shoelaces … one just had a knot in it! All the blood pumped into that instead of flowing through her normal laces and the pressure of all that blood going into the one knot meant that surgeons had to clamp it to avoid it bursting!)

It wasn't until Emma Gee spoke so passionately and positively about her experience that it really hit the spot. Not a dry eye in the room, but not for sympathy … for admiration. Overcoming challenges, seeing that the glass is half-full and embracing the fact that life is not ruined, just adjusted accordingly …”

The event was more successful than I could ever have imagined. It raised funds and awareness, it forced me to network with other professionals and it unmasked a personal passion to share the knowledge that lay dormant in my disabled body.

Even before this I had known that my days with rehab and volunteer work were not enough. People frequently said things like, “You've been through enough, Em, just enjoy not working.” They meant well, but they didn't understand how trapped I felt. During that Shoestrings speech, I saw a glimpse of a future for myself. I realised the value of my story, and what I could now offer to others.

But I had a long way to go. I decided to challenge myself by doing some casual marking for the OT Department at La Trobe University. I was so appreciative of the opportunity and it meant I could work from home. I knew what to write but my illegible writing was a problem. It was embarrassing to imagine the students' dismayed and disapproving looks when they saw my childlike handwriting.

There was the occasional opportunity to speak to OT students in their ‘living with a disability' module. Again, when telling my story to a group, I had a similar exhilarating feeling to that I'd experienced when I spoke at the Shoestrings event.

Dad drove me to all my speaking engagements. In the car afterwards he would sense my huge mood lift and often say, “Whatever you just did in there, keep doing it, Em.”

Later, I received an email from one of the students that only fuelled my passion to keep speaking. She ended the email with this line, “I will be a better OT because of you.”

I became determined to branch out further into the world. After all, I did actually have a job to return to. My position at the Royal Melbourne Hospital was still open for me, and they were even willing to modify my role to suit my new capabilities. But after my La Trobe experience, and knowing what my old job involved, it was obvious to me I wouldn't be up to it physically. Emotionally, it also felt like a backward step. Although it had been a safety net knowing the job was there, if I returned I would really just be holding onto the dregs of my former role. Facing a blank canvas was scary, but those close to me encouraged me to resign and move on. They were reassuring. “Em, your insights as a therapist
and
a patient will be invaluable in a future role.”

In spite of my disability I assumed that with my degree, knowledge and experience in this area as an OT, and my eagerness to return to work, this next step would be a cinch. But it turned out to be one of the biggest learning curves I had to face. I had heard awful things about the entire job-seeking process from my patients, but never truly understood the hoops I'd have to jump through.

First I had to get a doctor's certificate from my neurologist to prove that I had a chronic medical condition. This was needed to get a Job Capacity Assessment at Centrelink. That assessment left me deflated, gutted. Once again, they'd focused only on what I
couldn't
do.

Then came the job-seeking phase, months of waiting and being passed from one consultant to another before I secured my first return-to-work trial.
At last I was about to enter the workforce
. I'd brainstormed, anticipated and addressed all the likely obstacles. Sure, I had physical limitations but I'd bought a scooter to overcome my mobility issues and figured out how I could use my electronic organiser to avoid handwriting. I also planned to increase my hours gradually, so fatigue wouldn't be an issue. But then a week before I was due to start, my potential employer reneged. There I was, desperate to work and feeling totally powerless! It was a huge slap in the face. I remember being in tears on the phone to my consultant, “I'm so keen to work that I'd be happy to collect 20-cent pieces in a car park.”

After that I gave up on Centrelink and decided to resume job seeking on my own. Voluntary work led to casual paid work at La Trobe University again, but this time on campus. The OT department staff were extremely supportive but I was inwardly frustrated that the tasks I was doing were slightly demeaning. Admin and marking were all I was suited to with my physical issues and poor communication skills. My voice was still very soft and my words indistinct. I struggled to maintain eye contact because of my vision (looking up made my world spin), and all of these things depleted my already low confidence.

I needed to take a plunge and try something different. So I enrolled in a public-speaking course at TAFE, thinking if I could fix my inability to clearly communicate, I'd be able to return to OT work once again. But it was not that easy…

“So move your arms like this and pace back and forth and then stand still.” The tutor walked as he spoke, demonstrating these actions. One by one the entire group took turns mirroring his different techniques. When it came to my turn, he just looked bewildered at my limp body and my walking frame and said, “Perhaps just watch, Emma.”

After that course I realised that improving my communication skills was only likely to happen if I sought individual guidance. I met professional speaker Paddy Spruce, who helped me unleash my trapped story. With his face-to-face coaching, I began to adapt how I presented to my audiences. I bought a microphone to project my voice, sat when I spoke to compensate for my poor balance, bought a smart business wardrobe, and practised my speaking on anyone who would listen. I sought out familiar audiences, including my old workplace.

“You don't need to dress up for us, Em,” my former colleagues would say. But dressing up in a suit and caring about what I looked like hugely improved my confidence. The muscles on the right side of my face were still paralysed, affecting my speech and appearance. Instead of undergoing invasive treatment like skin grafts, I decided to trial a Botox regime administered by Ian Carlisle, a remarkably generous and gifted plastic surgeon. Even though I felt like a human pincushion, Botox injections into the left side of my face seesawed my facial muscles and forced the paralysed ones to work. I also trialled a subcutaneous filler injected into my right cheek and moulded like wall putty across my now-atrophied facial muscles. Not only did I appear more normal, talking and eating were easier. An added bonus was that my pool goggles suctioned properly onto my now more symmetrical face, resulting in fewer eye infections.

I finally felt I was transforming myself, moving at last into a new and almost exciting phase of my life.

Chapter 32

Moulding a New Identity and Direction

Being a young woman, it was my appearance that worried me most at that time. In the first period after the stroke I wore stick-on prism glasses that made it seem I was viewing the world through venetian blinds. I looked like I was off to see a 3D movie. After tolerating this for a few months, I happily forked out my disability pension to pay for a pair of permanent glasses. These ‘Coke-bottle plus' contraptions did the job of fusing my two worlds, but I was still self-conscious about the image they conveyed. I confess to taking them off and preferring to put up with my spinning double vision rather than copping strangers' stares. Besides, they were so thick that the weight of them hurt my nose.

The immediate benefits of undergoing Botox made me eager to explore other procedures. As soon as I could, I opted for squint surgery to realign my eyes and correct my double vision. This involved detaching and shortening the muscle on the right side of my eye to swing the eye to the right, and align it with my other eye. Despite fearing surgery in case I had another stroke, I was actually excited to have this procedure. In my head I would wake seeing only one world again, my visual deficits reversed.

I enter a booth, a combination of a department-store change-room and a toilet cubicle. The nurse instructs me to sit up on the sickbay-like vinyl bed beside a pile of brown-paper bags and white, folded gowns. She looks down at her clipboard. “Any history of diabetes, heart disease, back problems, arthritis … stroke?”

I satisfyingly answer loudly No to all but stroke. With each condition she purses her lips in disbelief, moving her poised pen from hovering over the ‘Yes' box to the ‘No' box. The questions eventually finish and my blood pressure is checked. I emerge from the booth in a now-familiar outfit – the see-through gown with a split up the back, the blue elastic shower cap and matching booties.

Exhausted from dressing, I collapse onto a grey plastic chair, joining the other vulnerable white-gowned people. This is the perfect environment to breed nervousness, all of us stripped of our uniqueness. I mentally re-dress them. The man to my left in a dark grey business suit, the lady ahead of me in bright pink with matching lipstick, the elderly man to my right, warm in a brown-checked sports jacket. I smile to myself.

Every other patient has an arrow marked on their forehead above their left or right eye. Everyone but me. I anxiously scan the room for an explanation. A sign on the wall to my right reads that all patients are marked to indicate to the surgeon which eye is to be operated on.
Why don't I have one? Is my right-sided paralysis identifying enough?
I am nervous, yet thankful it's my eye not my brain that's about to be operated on.

“Right eye?” my surgeon asks, while a nurse helps him tie his blue gown.

I answer immediately, “Definitely the right one!” I try to accurately point my ataxic finger to my right eye in case he can't tell his left from his right. I feel an urge to escape, a need for some familiarity. The nurse holds my tense and freezing left hand while the anaesthetist injects cold fluid into a vein in my right hand. A rush of anxiety suddenly engulfs my bloodstream and I'm forced to surrender.

I wake up an hour or so later in the recovery room. After wriggling my toes and circling both wrists, I fall back asleep – assured I have not had another stroke. But the procedure is not complete. Soon after, my surgeon returns to tweak the adjustable sutures to alleviate any double vision. My dad is standing at the end of my bed.

“What can you see?” my surgeon asks.

I see two Dads still … only now one is shadowed; the blurry image is on top of the other instead of beside it.

“Um Dad, actually two of him … two stethoscopes … two of you … so still double,” I say quietly in disbelief.

“Overcorrection,” my surgeon says, puzzled, glancing at his assistant while pulling the eye muscle a little and tugging the black stitch with tweezers.

“How about now?” he queries.

“Dad's now kind of single but he has two heads!”

The surgeon doesn't respond, just completes the procedure by tying a knot in the black thread. It's a done deal, my wonky vision now permanent. Dad crosses his arms and observes my nightmare from afar. My mum and brother enter. They look concerned and sad for me. No one says anything but everyone seems to know the surgery hasn't gone to plan. Mum's eyes well up empathetically, and I quickly catch the tear I feel escaping down my left cheek.
I have to be brave. Once I cry, I know I won't stop.

After all my visitors have left, my tears erupt. I walk to the bathroom and glance again in the mirror. Yep, it's true. The surgery has aesthetically straightened my eyes. But it has also over-corrected my double vision, moving it from a horizontal to a vertical plane. Where I'd once viewed a person's cloned head on their shoulders, it now sat anatomically wrong on top of their heads! Suddenly, my brain has to readjust to a different view of the world. I may appear more normal, but am destined to continue to view the world in a distorted way.

The operation could have been attempted again when things settled, but as my eye was prone to ulceration, this was not encouraged. I had hoped the spinning would also be fixed. It wasn't. They suggested anti-seizure medication for this but I'd tried it before for my pain and knew it only worsened my balance.

In spite of these setbacks, my speech and endurance were improving and I was gaining lots of experience in front of audiences, doing free talks at places like Toastmasters, Rotary and Probus. I continued to network with other speaking organisations. My passion to share my story to a wider network only became stronger. With Paddy's help I learnt to present without a script so I could give my audiences eye contact, and I developed new topics, drawing on my experiences since the stroke. For example, with health providers I focused on client-centred practice, and with school students I would talk about resilience.

Emma commences her speaking business, 2010.

Soon enough I was networking with larger groups of people, at times very intimidating audiences. Although daunting, I approached each event as a personal challenge.
I need to advocate for all those people with disabilities. Try to break the disabled stereotype.
I loved this work but I could only do it occasionally, as retelling my story was emotionally and physically taxing.

Em attempts to break the disabled stereotype in her Inspirational Speaking Business, 2012.

At the same time I decided to begin a Masters Degree in OT at La Trobe University. It would enable me to one day teach OT students, and would give me the credibility to prove to people that there was an intelligent mind trapped inside my new disabled body. The decision boosted my confidence even more – I felt that I was beginning to shape a new identity for myself.

But life was very different this time around at La Trobe, the university where I'd taken my original degree. Now I had to be hyper-aware of things I had never noticed before, like where the stairs and disabled toilets were. Study itself had new challenges. Articles had to be converted to large font or audio for me. In spite of the constant support from the OT department staff and the disability advisor I was often given the material late or not at all.

The energy I exerted trying to access the material I needed heightened my frustration. I felt overwhelmed and isolated. The toll of studying began to compromise the balance in my life. Study deadlines meant I was pushing aside what I valued most, family and friends. The balance had shifted and now I was not getting enough time for rehab. After two semesters I made the difficult decision to defer. After being so keen to prove to others that it was possible to study again, it felt as though I was giving up. But I told myself, “I can make more of a difference now, drawing on my experiences as a therapist and a patient, than I can by studying for years for yet another degree.”