Reinventing Emma (21 page)

Chapter 33

A New Love Life

At the same time I was experiencing these setbacks at university, I was doing some voluntary work at the National Stroke Foundation, and I unexpectedly landed into my first post-stroke relationship. He was also a stroke survivor. Our relationship began with a phone call. I was self-conscious about my slurred speech, but the ease of the conversation and the huge amount we had in common counteracted the nerves I felt when speaking on the phone. He was interstate and we got on so well that he suggested a Melbourne visit and reassured me that how I looked didn't matter. I knew he had very few physical side effects from his stroke, and I repeatedly warned him of all my visible disabilities, dreading that once he saw me face to face he would quickly leave.

He flew to Melbourne and, to my surprise, seemed romantically interested and a relationship developed. The fact that a good-looking guy found me attractive in my new disabled shell was both flattering and terrifying.

In theory it was great to have a boyfriend again, and I became swept up in the idea of someone actually liking me. But in practice it was a completely different experience to the relationships I'd had before my stroke. It was difficult meeting his family and friends, trying not to be a high-maintenance girlfriend. When I stayed with him interstate I'd leave my frame at his home when we went out, and he'd hold me up and guide my steps. It made me feel like a rag doll, but less like a disabled girlfriend. As the relationship progressed I became emotionally and physically reliant on him. I continually needed to hear his reassurance that image didn't matter. To his huge credit, he took the broken Em and tried to fix her. He challenged me to be myself and not hide behind the disability label. He urged me to see that my physical limitations weren't an excuse not to achieve, but a reason to achieve.

At the time, though, I was still in my own disabled bubble, refusing to move on. One of his friends once said to me, “Do you always introduce yourself and then go on to explain who you were prior to your stroke and why you are like you are now?”

My response was honest, saying that I'd rather people know straight away what's happened to prevent less speculation. But looking back now I see that the person I viewed myself to be no longer existed. I was trying to cling onto my old identity. I needed to move forward.

It was refreshing to return to dating and I floated along, dismissing my gut instincts that the relationship wasn't right. The reality was that we were not compatible. I believed that I had to tolerate his shortcomings because he had to put up with so many of my own flaws. When he complimented me I doubted his sincerity because my self-esteem was so damaged. I wasn't able to see how anyone would like me when I had become
this.
I admired his trying to prove me wrong, but ultimately when I had such a huge amount of self-doubt, there was no way I could reciprocate. Eventually we split, and in spite of how distressing that break was at the time, on looking back I can see it taught me a lot. Those around me couldn't commit until I could see past my disability and begin to see my own worth. It was comforting to know that whether or not I'd ever enter a relationship again, at least it was possible.

In a way breaking up was a relief. After factoring another person into my lifestyle, it felt good to focus once again on my own needs. Though devastated that the relationship didn't continue, it made me determined to build on my own strengths and create a different pathway. It also made me realise the importance of reciprocating in my other relationships.

Those around me were trying hard to pick me back up and include me in their lives. My two close friends actually asked me to give speeches at their weddings. I decided to snap out of my negative mindset. I started going to hairdressers to have my hair done. I began joining my friends on the dance floor. Although I was reliant on holding their thumbs to balance while I tried to bop to the tune, the inclusive feeling was invigorating. I was often the last one standing and I think often responsible for getting many extra people up on the dance floor. “If she can get up there and dance that badly, I can for sure!”

Chapter 34

A Real Working Girl Again

The media and fundraising I had done for Shoestrings strengthened my connections with the National Stroke Foundation and in March 2009 I started working part-time there as an Online Project Officer in stroke support. This involved developing a national online program in the form of an interactive discussion forum for the stroke community. It was a place where people who had been affected by stroke, from carers to therapists to siblings and stroke survivors, could share their stories and know that they were not alone. Because my role was largely computer-based, my inability to write wasn't a problem and I was able to mingle with both consumers and colleagues again.

At the same time I could run my own speaking business, still presenting approximately every fortnight, and able to work from home when I needed to. The flexibility of my role was perfect, especially considering all my medical appointments and my rehab schedule. The only drawback was the inevitable problem of accessing non-accessible bathrooms. But …
I was a working girl again.

Em presents, encouraging and challenging her audiences to see things through her eyes (Melbourne, 2013).

“There you go, Em, have a good day,” the waiter at the café near my workplace would say, positioning my take-away coffee cup with a straw into my frame's cup holder. After a few months of adapting to my new work routine, I was finally able to enjoy my morning coffee at my desk again. As a coffee drinker now unable to carry a cup, this clever addition to my frame was amazing. My caffeine hit became my incentive to clamber up the steep hill of Queen Street. I even learnt that my frame's wheels fitted nicely in the cracks of the bitumen path's surface, making it easier to glide along so the hike was faster and safer. While getting into the city was a huge feat at first, my new employer was very accommodating, letting me come into the office later to avoid the city's peak hour.

“Morning!” I would say to my colleague already at her desk. “Embarrassing, but do you think I could get you to zip up the last bit of my suit?” I would hunch my shoulders to take off my black winter jacket, revealing the gap. “Sure, Em”, she'd say.

Feeling tired from my early start, I would stagger down the corridor, flick on the fluoro lights and sit down in my high-back, supportive desk chair. I'd turn on my extra large desktop monitor and enter my new password,
Ilovemyjob
. Choosing a positive password forced me to start the day in an optimistic light. The inappropriate comments by commuters, the tiredness I felt from a night battling my pain or slipping on the route to work, were soon forgotten. In this bright frame of mind, I began my day.

However, my positivity was tested by the sight of my metallic-blue crutch leaning on my office desk. It was a constant reminder of the rehab I should be doing. I had the best intentions of incorporating it into my work day, but walking with a stick when you're carrying folders, trying to get to a meeting on time, or to get to the toilet quickly, was not realistic. Concentrating on my gait was
not
a priority. I began to resort to using my faithful frame in the office, but I felt guilty doing so.

Ever since Bec's wedding I had found it hard to shake off the expectation that I should be graduating to a stick. Trying to balance work, rehab and play was impossible.
What a bad role model I was for other stroke survivors
. I wanted to leave my disabled body behind and focus on helping others impacted by stroke. But I couldn't.

Approximately three years after my stroke my pain peaked and started to significantly hinder my life. I investigated a new procedure called deep brain stimulation. It involved further brain surgery to rewire the nerves. The surgeon was confident in carrying out the procedure, but there was no evidence that it would reduce my pain as, to date, it had only been used on patients with Parkinson's disease. This seemed too much of a risk. I felt stuck and helpless. Although I had a job, the cost of seeking opinions was immense and wasn't getting rid of my disability.

Thank goodness at the time I was in the care of an amazing private physiotherapist, Janet. Not only did she help me manage my pain physically, I could vent about the emotional burdens of my new life. I was beginning to see how they would also travel with me and needed to be addressed. Yet in the busy-ness of life, there was little space to complain to my close network. I wanted the time I spent with friends and family to be enjoyable.

Eventually I found a great psychologist, Julie. Meeting with her gave me a scheduled, uninterrupted space where I could selfishly let off steam about the many frustrations in my life. Scheduling this time also ensured that I didn't bottle things up and that I didn't unnecessarily burden those close to me.

I also began treatments with Jared, an osteopath, and looked into mindfulness strategies like meditation and yoga, choosing to self-manage my rehab. I needed to be aware of my own needs if I was to perform at my best. Eye infections, medical appointments, pain management, waves of fatigue, sleepless nights and the emotional toll had to be factored in. I had to control them rather than let
them
control me. These new strategies provided a level of awareness and led to clarity and a sense of calmness and control over my life.

Going away alone was another technique for rebalancing my life. Although I loved time away with my close family and friends, I realised I was exerting so much energy worrying that I was spoiling their holiday that the stress outweighed the pleasure. I began taking lone trips to Gwinganna Lifestyle Retreat, a well-known resort in the hinterland of south-eastern Queensland.

Another way to refuel was by staying at my auntie and uncle's home in Sydney. My auntie is an important role model in my life. She has an endearingly positive outlook, considering the many personal health obstacles she's had to tackle. My uncle is a constant driver in my life, too, challenging me with goals that many automatically dismiss. Returning to my own routine after these visits, I felt more equipped to face ongoing obstacles. Being a working girl again and helping others was only going to be possible if I took good care of my own needs.

Chapter 35

Independence Tested

In 2011, six years after my stroke, my parents (and main caregivers) decided to move to the country to enjoy the delayed ‘child-free' retirement that they definitely deserved. Dad's renewed enthusiasm for life in the country reminded me what I'd taken from them when he retired to be my full-time carer.

When they sold the family home, 10 minutes away from my unit, they also took a big chunk of my support with them. I realised how many little things they'd done for me. With my parents leaving, I had to delegate my support. I hated burdening others, particularly my siblings. For several months after my parents left, I tried to live pretending I didn't need anyone to help me. I stubbornly refused to accept or even ask for help, and didn't want to become reliant on strangers and feel the need to repay them for their support. Jobs like putting out the rubbish and cleaning up dog poo I had gradually let my parents do without feeling too guilty. Now when friends came around to see me I had to ask them to do these tasks, eating into our catch-up time. It seemed to unbalance the relationship, them becoming more like carers in my eyes. Also, I'd be taking that caring role away from my parents, and I wanted them to have a reason to come back to me.

This mindset made everything feel too hard and I progressively became more resentful towards my parents. They would return, and in the small window of time we had together, I'd unconsciously (and consciously) remind them of all the extra obstacles I now had since their move. This negative thinking fed my resentment. They'd leave and I'd be left with the guilt.

After accidentally locking my keys inside my unit three times in a row and flooding my laundry twice, I realised I couldn't rely on my parents' frequent but irregular visits to help me. I had to structure formal supports into my life. I told myself to snap out of it and began to notice the positives.
Gratefulness and resentment can't co-exist
. Gradually, I became grateful for my parents' input rather than critical of their oversights.

I gave spare keys to friends, had a friend mind my dog Gilbert when I travelled, began shopping online, caught more cabs and increased my weekly council homecare hours. My siblings and close friends happily took on many of the tasks that my parents had previously done. All these changes empowered me to live independently and I'm sure my parents didn't feel as guilty. I saw that by asking for and accepting support, I could achieve a lot more in my day. I became reliant on my parents more for emotional support, through reassuring phone calls or chats over Melbourne coffees when they came to town.

At times I'd retreat to their place in the country to rest and refuel. Here, I was happy to give up my fierce independence and lap up any TLC they could give. Their frequent, “Can I get you a cup of tea, Em?” and “What would you like me to cook for dinner, Em?” or “Can I do your washing?” helped revitalise my tired body and I'd happily let them take over. But in this relaxed state, I found that my brain completely shut down and my function was compromised. After each visit they'd drop my bags, Gilbert and me back at my unit then leave, and a tidal wave of sadness would hit. I would sit in eerie silence, feeling overwhelmed and desolate. I could tolerate these feelings, though, after the emotional recharge they'd given me.

Emma enjoys time at Castlemaine with her parents, 2015.

As the years passed working at the National Stroke Foundation, I gradually adjusted to my parents' absence and seemed to restore balance in my personal and working life. Despite feeling finally able to contribute to society again, the longevity of my stroke began to kick in. My ongoing eye problems meant I eventually had to accept the involvement of Vision Australia, who helped modify my workplace.

Deb, my dedicated ophthalmologist, had suggested procedures to preserve my vision and slow the deterioration in my right eye. I'd opted to have a gold weight inserted into my right eyelid that had stubbornly refused to close since my stroke. This made my eyelid heavier and also added worth to the value of my body! Although invasive, this procedure reduced the number of eye infections, made blinking easier and allowing the lid closure needed to protect and moisten the right eye, preventing it from drying up further and dying.

My eye problems and lack of mobility remained a frustration, but my colleagues made my situation easier. “Afternoon, Em. Do you need me to put in eye drops?” or “Em, do you need anything from the café downstairs?” or “Want me to carry your things?” or “It's about to pour outside, Em. I'd leave now and work from home if I were you.”

Although they were mindful of the practical difficulties I faced in my role, like enlarging tiny font size on a document, the invisible aspects were harder to recognise, and were often unintentionally overlooked.
How do you describe the impact of invisible symptoms such as chronic pain and ongoing fatigue?
I felt that burdening them with my physical needs was enough. Bringing attention to additional invisible problems would only highlight what I couldn't do.

I didn't want my disability to dictate my role. On one hand I craved their understanding and consideration. On the other hand I felt frustrated when they didn't treat me like a normal employee. Subconsciously I was becoming resentful. At times I chose to see their flexibility as being too accommodating. I wanted to be pushed, challenged and part of me questioned their intentions. I didn't want people to tiptoe around me.
This was my chance to make my stroke worthwhile, make a difference.

Since returning to work, I had taken up any opportunity in the media to share my story. Through my involvement at La Trobe University and the OT department I was heavily involved in other projects and studies. I participated in research projects with my physiotherapist and plastic surgeon. Doing something now that might help others in the future made what I'd been through seem worthwhile.

My job at the National Stroke Foundation also gave me many opportunities to ‘get out there'. They sought my input for many fundraising opportunities and campaigns. I had the privilege of meeting the Governor-General, The Honourable Quentin Bryce, at the launch of the Depression and Stroke DVD, a collaborative project between the foundation and Beyond Blue. In 2012 and 2014 I went to Parliament House, Canberra, with the Stroke Foundation to meet Members of Parliament in the ‘Fight Stroke' campaign to increase awareness and funds from the Australian Government.

Emma meets The Honourable Quentin Bryce at the Beyond Blue and National Stroke Foundation DVD launch, Sydney, 2010.

After four years I decided to take a career break from the foundation, as my vision was progressively deteriorating and I was struggling with the computer work. A large portion of my workload was sitting behind my desk and revolved around future programs. While this was suitable earlier on, I had outgrown my role as my abilities emerged over time. I now had more clarity about my purpose. My passion was to educate and advocate in a face-to-face capacity. My own speaking business had grown and my experience returning to work had reinforced my need to work directly with people.