Heading outside laundry basket under one arm I realise how hot it is. I retreat back to the house and pick up my trusty Akubra. Slipping it upon my head, it catches painfully on the screw in my forehead. A moment of disappointment ensues, “I can’t wear my favourite bush hat thanks to these stupid screws!” I pull it off and ponder. Eventually remembering I have removable padding wedged into the band to help it fit, I remove it and try again. Perfect. No catching, it simply slides into place without discomfort. That’s when it occurs to me that my scar has caused no discomfit with the donning of my hat, no pain at all. It would seem that at three and a half months post-op, my scar has lost a good deal of its sensitivity to touch. Uplifted and excited I head to the phone. With such information, I simply cannot wait. I call and the phone is answered, I blurt out my name and that I would like to book to have my hair cut and coloured. I mean, come on, it’s been three and a half months since I had it done!
My mum came to stay and help out for a little while, enabling Jase to return to work and catch up on his projects. He joked with someone the other day that he only ever takes sick leave because of me, to which I quipped, “If he would stop moving me around on postings, I might have a chance to accrue some leave.”
Anyhow, my mum was in town to help out and we had an outing one day into town. We were dropped off by the taxi outside one of the two shopping centres in town (Alice Springs has a population of 30,000 so we don’t have loads of shops). As we wandered along, browsing in the window of the chemist and shoe store, I commented on the ‘weirdness’ of window-shopping in Alice. Usually if I go shopping, I know exactly what I want and go to the one store in town that is likely to have it. Despite this we pass a pleasant hour browsing and amused ourselves in the home wares store, commenting judgmentally on some of the ridiculous kitchen utensils now available, you know, banana cases, avocado slicers, specialty garlic peelers, juicers and many other things most commonly done by hand without much effort at all.
After our gawking we stopped for a snack and coffee and chatted until I began to feel a bit fatigued. We then ventured into the supermarket for a swift raid and it was here that my brain decided it was done with the outing. Thursday afternoons can be busy enough, as it’s often payday for many people, add tourist season and the supermarket late afternoon, is chaotic.
I told mum I couldn’t stay, as I felt completely overwhelmed by the noise and colours. She valiantly offered to do the shopping, telling me to go find a seat until she was done. I did as instructed, finding a seat outside the checkouts so I could find her easily. As I waited, I noticed that every child walking past turned to look at me. Initially I was curious as to why but slowly it dawned on me that it must be the eye patch.
Then one kid, maybe eight years old, caught my attention as his head nearly spun off as he did the double take to stare at me. Not long later he approached again with his dad and younger sibling. As they reached the seat, he let go of his dad’s hand and stopped right in front of me, smiled nervously, waved at me and shyly said hello. I said hello back and he then added, “You look like a pirate.” “Is that so?” says I. He grins and takes off to re-join his family and I noted he spoke rapidly to the younger boy and pointed in my direction. They both took another look at the Pirate before disappearing from sight. He was very cute and quite brave as well, I thought. Although, I admit to myself that I wish I had thought faster and answered him in a gravelling ‘pirate’ voice and scared the life out of him, but alas, a missed moment of hilarity.
Fortunately for my rapidly fading self, Jason was able to pick us up and drive us home. In the car, I was telling mum about the boy who spoke to me and we were having a laugh about it when Jason indignantly interjected. “So it’s ok for a boy to call you a pirate but when grown men talk about it, its not. Just what exactly is the age where it goes from being funny to not?” I looked at him considering a number of responses (no, not all of them polite), mum jumped in with an answer, “The age when they should know better.” It may not be right but it feels very different when a child, almost reverently, thinks I might be a pirate to when adult men, deliberately call me out about wearing a patch for the purpose of making fun of me. That said, I’m thinking of hiring myself out to entertain at kid’s parties – I could make a fortune.
Last week a small, flat parcel arrived at the house. It had my name on it and being a lover of parcels, I tore into it excitedly. Inside was a note from my friend, Miss A and a gift, a gift I could never have imagined receiving – my very own super-hero cape. The note explained how my friend has been making capes for sick kids. A worthwhile program supporting kids as they go through treatment and recovery from illness or injury. I’d never heard of it but think it is a lovely idea. My dear friend thought that having my own cape might help me remember that I “am strong, brave, committed, patient, mindful and loveable.” I started to cry just now whilst reading that again. The idea of the cape is to remind those of us wearing them, that we are more than our illness or injury and are strong enough to win through the pain to recovery. What a marvelous gift!
I had to put it on straight away. Pulling it free of its wrappings, I laughed delightedly, seeing it was a beautiful purple (my favourite colour) and had an enormous ‘V’ stitched onto the back. Putting it around my neck, my hands shook with excitement as I secured the velcro clasp at my throat. Infused by laughter and excitement, I began to twirl around, getting air beneath the cape, lifting it into the air, I ran (or rather slid upon the tiles in my socks) around the house, my mum looking on with amusement and concern. My spirits were lifted so, that it indeed, seemed to have tapped super powers within me.
Later that day, when Jason arrived home from work, I disappeared into the corridor hurriedly pulling the cape around my shoulders as my mum told him there was something I wanted to show him. Peeking around the corner to be sure he was watching, I leapt into the dining room and took off running around the table with my back towards him, so he could see the whole cape, then took off into the lounge room with my arms extended in mock super hero flight, followed by his joking suggestion that I was an idiot. As I turned, I told him he was jealous and ran as fast as I could manage back to the dining room, holding the cape out as I ‘flew’ around the table and out of the room, having generated enough speed and air flow to hold the cape out, trailing in the wind as I disappeared from view.
Jase was suitably amused by the performance and told me as I returned, panting from the exertion; I should do that five times a day to build my fitness. I’ve got a super powers cape, I think to myself, why do I need to exercise?
The cape is displayed proudly, on the back of a chair in the dining room and whenever my gaze falls upon it, I smile and think fondly of both my friend and the silliness wearing it, brings out in me. It is a treasured possession now and I do wear it around the house, whenever I feel flat or particularly tired. It makes me feel better. Stronger. Loved and supported. Super!
There’s nothing quite like family to help out when times get tough. There’s nothing quite like my family.
Upon discovering that I do, indeed, have screws in my skull holding in the bone flap removed during surgery, Jason, my beloved husband began looking for his magnetic Bucky Balls to see if they would stick to the metal in my forehead.
Yesterday during a conversation, my mum joked that I may literally “have a screw loose”, and fell about laughing.
Yep, there’s nothing quite like family.
Aneurysm, Anzacs, Brain, Bruises, Craniotomy, Cards, Dizziness, Drugs, Enemas, Extra Blankets, Friends, Flowers, Gym, Gifts, Husband, Hudson’s, ID, Intravenous, Jason, Jelly, Kindness, Kids, Love, Laughter, Mum, Mother-In-Law, Neurosurgeon, Needles, Operation, Ouch, Pain, Pool, Queries, Quest, Rehab, Relief, Sleep, Specialists, Tears, Trapped, Underwear, Uncertainty, Visitors, Vomiting, Worrying, Writing, X-marks-the spot, X-ray, Yammering, Yearning, Zits, Zonk.
Yesterday was Territory Day, the one day of the year in the Northern Territory when one cannot only buy fireworks but it’s also legal to let them off. Having grown up in a state where fireworks were illegal since before I was born, my first experience with fireworks was only about twelve years ago in Canberra where again, there is one night of the year where setting off fireworks in the car park of the apartment block one resides in, is okay; right up to the moment when one of them falls over, shoots exploding balls of fire repeatedly at a neighbours car, setting the alarm off. That apparently marks the point where everyone grabs up the remaining toys and runs into the shadows as quickly as possible. If only we had thought to invite said neighbour to our party. Nonetheless, I was hooked.
I have digressed.
At the discovery that Tuesday was Territory (and fireworks) Day, I became teary. At first I didn’t understand why but as the weepiness persisted, I realised I was upset at the prospect of me and Jason missing out (again!) on something we get a lot of fun from. Due to my stupid surgery, we have already missed the Finke Desert Race, the Beanie Festival, early winter camping opportunities and the opportunity to mourn for our fur baby on the one-year anniversary of her death (my surgery date).
Winter is when this town really comes to life. The next few months are chock full of festivals, fetes, markets, and shows. It’s a crazy time of year but also an incredibly fun one. Jason and I have missed out on a lot of fun due to my previous health problems and I guess the thought of missing out on fireworks night just brought all that into sharp focus for me. We weren’t in the position financially or physically (me) to buy a heap of colourful and oddly named legal explosives and stumble around in the dark trying to outrun the burning wicks of these unpredictable toys. After a good sob, I reminded myself that soon enough I would be recovered and we will be able to re-join the world and participate in the things we love doing. It will just take a little while.
Then early Tuesday evening Jason took a call on his mobile and left the room to speak with the caller. He returns saying our friends S and U are having fireworks at their place and have invited us to join in. I am thrilled. He went on to say there would be a number of people there from his work including some visitors from interstate. I am less thrilled at the thought of navigating a group of strangers but desperately want to see some fireworks and to participate in something other than ‘recovery’.
Once we were ready to head out, I began to feel nervous and Jason asked why. “I have a giant black eye patch on my face and it seems when in public men can’t help but make jokes about it. I am moving awkwardly and feel self conscious and the idea of being around a group of people makes me hesitant,” I respond. He reassured me the group won’t be too big and people won’t make fun of me or ask questions. Everyone knows he has been on leave to look after me so it will be fine. As we made our way into the chilly night air, I hope he is right. It may seem silly but questions about the patch invariably lead to me explaining I’ve had brain surgery (I really need to make up a better story) and the seriousness of that tends to kill conversation and then I own everyone’s discomfort. I thought facing and having this operation would make me braver and less worried about stupid stuff. I guess I’m still working on that.
Jason decides to take the four-wheel drive as it’s the older vehicle and there will be lots of falling embers (or a direct attack if history repeats itself). This seems a sound choice; right up to the moment I opened the passenger door and remember how high the vehicle is. I make a couple of attempts to get in normally and fail. My left leg doesn’t have enough strength to push me up, nor does my left arm provide any leverage from the door armrest. “I want to see fireworks!” is all I can think. Taking the smaller vehicle never occurs to me and I set about solving this dilemma. After experimenting, I work out that if I kneel with my right knee on the step, and put my right arm on the seat, I can use my whole of body strength to pull my left knee up so it joins the other. From there I can push myself up with my right leg and pull myself into the car using the far edge of the seat and the handgrip above the glove box. I finally arrive in the passenger seat and Jase looks at me, “Are you ok?” “Yep,” and with that we head off to our friends house, where I kind of slid out of the vehicle, keeping a strong hold on the handgrip above my head.
Our friends great us warmly and have saved a seat for me outside next to the heater and I feel reassured by their thoughtfulness. We make our way out and I take my reserved seat. I nod hello to the people at the table and Jason greets those standing. Within two minutes of sitting, a large, American man at the other end of the table looks at me and loudly asks if we have met before. Before I can answer, his wife seated to my right replies that we have, at the last get-together here. He then says, “So what’s with the eye patch, is it from an unfortunate fireworks accident.” I acknowledge that is a good story and I may use it in future. There are a few quiet laughs. He throws out another joke and I ask him if this will continue for a while as I might grab pen and paper in case he hits on any good ones. He then boldly blunders forward, his voice booming, “So what’s with the patch?” Bereft of a good lie, I tell him, I had brain surgery recently and as a side effect my right eye has been affected. I need the patch to be able to see normally until it heals. Short, and to the point. Silence follows, a few people sip their drinks and look away but the quiet doesn’t last. The bold American has more. “Well, don’t I feel like an arse now?! I mean how could I know that?” Then he begins mumbling more of the same into his wine glass. I’d have felt bad for him, had he not zeroed in on me immediately as a potential source of jokes. There is now a definite awkward silence as he removes himself from the table. “That went well”, I think to myself sarcastically. “Yep, no-one will mention the eye patch, no-one at all.”
Post script: We enjoyed the rest of the night, I lasted nearly an hour and a half out and whilst every explosion sent a ripple of pain reverberating along the bones of my head, I was happy to be out watching the fireworks.
Warning – Organ Donation topic. May upset some readers – did you read that mother??
Was talking with a friend yesterday and I mentioned I was finalising the paper work to donate my brain to research in the event of my death – you know, when I’m 100. I explained that due to having had a stoke and two brain aneurysms, the Brain Bank (seriously, that’s what it’s called) have said they are likely to keep my brain in tact, should they get it. Apparently, most brains are sliced up and distributed to a number of researchers. I commented that they probably would be interested to see the well worn pathways of my habitual errors. My friend said they’d probably be interested to see the size of the area responsible for resilience. We joked then, that part would probably still be pulsing even in its storage tank. We thought this was very amusing.
Last night at home, the following conversation occurred: Me: I think I have a tension headache. Jason: Well, you are under a bit of pressure at the moment. Me (looking sideways at him): Really, I wonder what I could do about that? Jason (grinning): Maybe we could cut a hole in your head and let the pressure out. Me (laughing but head shaking): Too soon, too soon.
After investigations of a growing brain aneurysm, I need to have brain surgery to put a clip on it to prevent it from bleeding. My Neurosurgeon has told me that due to its growth in the past year, irregular shape and location, this aneurysm has a higher likelihood of rupturing. A rupture at its location, she says will be “catastrophic” for me and doctors don’t tend to exaggerate. If it bleeds, I would suffer significant brain damage and might die.
Over the past week I have slowly been telling my closest friends and family, difficult conversations but important because I know my husband, Jason and I will need support. During one of these conversations I began joking that I should get the doctor to replace the section of skull they cut out with a clear panel and charge people for a peek at the workings of the human brain. Gallows humour, I know, but us Australians are like that.
Whilst laughing at this absurd idea, my friend chimed in with “just like a sky light!” Hence a blog is born.