Chapter 37

The Longevity of Stroke

As a naive stroke survivor I thought that over time things would slowly become easier and get better. But I have learnt that stroke is a never-ending story, particularly where my vision is concerned. Over the years my ophthalmologist has suggested ways to preserve my sight and slow the deterioration in my right eye. Despite religiously following her instructions to lubricate, cling-wrap, use an eye patch, etc. my vision has slowly worsened. Since my stroke my right eye has been drying out and slowly dying.

The end point in the race to save my eye is a tarsorrhaphy, but I have done everything in my power to avoid this. It is an old-school procedure where they stitch your eyelid partially closed, thus permanently shutting the eye and protecting it from further infection. After years of measures to normalise my image, the prospect of sewing my eye shut feels like giving up. Despite the difficulty of going against many experts’ recommendations, I have decided not to go through with this procedure. I need to look at the situation holistically. The procedure would impact more areas in my life than my vision. My confidence, my youth, my image, would also be further compromised. Not having the surgery was the right decision for me.

I take full responsibility for how my eyesight is today. Having this ownership prevents me from blaming or living in the past and I find that complaining about the symptoms (that could’ve been prevented or delayed if I’d opted to have the procedure) isn’t fair on those around me, and a waste of energy. It is what it is. I have opted to continue lubricating my eye, moistening the environment I’m in and even resorting to wearing my dreaded eye patch again at home.

Regardless of all that, I’m now basically blind in that eye. Over the years I’ve adjusted to focusing on the spinning vision I have in my left eye. I’ve sought advice about bionic eyes, nerve grafts and other options. Ophthalmology research is moving so fast. I remain optimistic that one day it will catch up with me.

My eyes are one of many ongoing health issues. I now take preventative measures like having annual flu vaccinations and continue with Botox injections. Another unexpected problem secondary to my stroke is the need to wear a plastic mouth guard at night. After a childhood wearing expensive braces, my atrophied jaw muscles are causing my perfectly aligned teeth to shift.

The financial toll is immense. Instead of saving for holidays or my kids’ school fees, I’m paying for medical aids and procedures. What’s more, I am not able to work as I once did. It’s physically and emotionally taxing, but I have to factor in room to incorporate my ongoing stroke recovery needs. I am fortunate and reassured to know that my parents are always there for financial support should I need them. The stress that this lifts from my life is huge. Especially when Centrelink constantly suspends my pension, assuming I’m no longer disabled. I am forever grateful for the financial security so many others don’t have.

Equipment is essential and I admit I choose to get aids that are not just functional but also younger looking and funkier. They’re more expensive but they make having to use an aid at my age more bearable. It’s easier to accept if it’s one that’s well designed and fashionable. Yes, even in the disabled world there is a fashion hierarchy! Unfortunately frames need replacing, which means forking out $700 to $800 every couple of years. My first frame was snapped in half like a chicken bone by an overly helpful stranger handling it. Mum drove over the second one with her four-wheel drive. The third frame rusted and the fourth one was stolen from my carport.

The longevity of stroke continues to test and challenge me. At times I feel the after effects of stroke just keep punishing me. Even eight years later, I needed more head surgery. The metal screw from the plate used in my craniotomy had rubbed on the arm of my glasses and become infected, needing to be removed. I was unable to wear glasses for months while it healed. I thought another operation and the associated dependence would hugely set me back. But maintaining important things in my life makes each difficulty much easier to withstand. Being a bridesmaid for one of my best friends, despite my having ‘a screw loose’, was both an honour and a great distraction.

Bridesmaids Kim, Em & Mel celebrate Tracey and James’ wedding, Melbourne 2013.

While I’ve endured many physical obstacles so far, the emotional toll is often overlooked. Depression is the Siamese twin of stroke. Your mood fluctuates like a seesaw: high when something finally clicks after years of practice, low when you feel like you’ve gone backwards or need to ask for help.

None of the obstacles I’ve faced could have been dealt with without the incredible support network I’m lucky enough to have. Despite my stroke drastically changing the dynamics of our family, the way they all have supported me throughout my journey has been unbelievable. Mum and Dad are my all. Despite the distance, they frequently visit and are constantly there for me. They are not only my best supporters but also my best friends. And my siblings – they’ve never complained to me about me stealing my parents’ attention from them, even though I still lie awake at night feeling guilty about it.

Em with her siblings, 2014. (L-R Pete, Em, Bec & Kate)

Bec has been a constant motivator in my life and I know will always be there for me. As my identical twin and with her ‘anything’s possible’ mindset, she has provided me with a baseline. She has always challenged me. If I’m too sensitive, she tells me so, always reminding me to move forward and not to take things too seriously. I sometimes become jealous of her living the life I had planned, getting married and having three beautiful kids. But her new little family make me feel included in their life. In a way, her having a baby was the closest thing to me having my own children. Even today, three babies later, when she says, “Em, she’s got our eyes,” I feel a shiver of excitement and burst into a smile.

Now that Bec has a young family I seem to be the one with all the freedom. “Do yoga for me, Em,” she’ll say with a sigh, removing the pink lid of the play-dough with her teeth, stirring the pot of soup she’s cooking on the stove while balancing her youngest on her hip. I leave the chaos, feeling guilty at having ample ‘me time’, off to yoga and a peaceful hot coffee to follow.

My brother Pete is very different to Bec. Over the years I have really come to rely on his opinions. He’s very sensible, full of wisdom, and he rarely makes a quick decision; he examines the pros and cons of every situation. My sister-in-law Rach is unbelievably supportive and nurturing, while also very practical and straightforward. Over a cup of tea I often discuss an issue that is bothering me in my life, and Pete and Rach always give me their direct, very rational viewpoint. They have the ability to step aside and assess a situation and not get emotionally bogged down. I’m sure without their foresight, wisdom and guidance I would have made some bad decisions.

Although my older sister Kate lives interstate and is busy with her work and family, she has been a constant listener and enables me to live in the present. As OTs we have a lot in common. Although due to work commitments nowadays my stays there are less frequent, I still always feel so welcome in their home, their spare room even entitled Em’s Room. My niece pointed out that they couldn’t buy a certain house as there were, “Too many stairs for Emma.”

At times when I have become too engulfed in an issue my many supporters have helped me to highlight the positives and put things in perspective. I recall Bec’s words when I was contemplating whether or not to stitch my eye closed and struggling to find any optimism in the situation. “Look at the positives, Em … you’ll have the blokes in the street lining up, thinking that you’re winking at them,” she said. Her attitude is contagious and reminds me that a sense of humour is essential.

Em with her incredible family, Castlemaine 2014. Back row (L-R) Bec, Paul, Tom, David, Lyn, Harry, Doug. Middle row (L-R) Rach (in pink), Lucy, Holly, Kate. Front row (L-R) Em, Pete, Ellen, Olive, Jack.