Pity Party For One

I wander about feeling almost normal, fewer and less severe headaches to remind me of what I have been through. Every now and again though, the thought, ‘I had brain surgery’ looms so large in my mind, it casts a shadow over all else. When this happens, I am struck dumb momentarily.  As I begin to think upon this ridiculous pronouncement from my own mind, disbelief and sadness course through me like sludgy rivers on a path to nowhere. Despite the evidence to the contrary, I cannot reconcile this; I mean really, it does seem a little ridiculous, does it not?

There begins my very own pity party, a come-as-you-are affair of limited value.  I begin thinking just how darn unfair it is, after all I have been through, to have this happen. Useless. Unhelpful. Waste of time. Thoughts. Nonetheless, there they are, circling my mind, triggering feelings of loss, sadness and even anger.

I try when this happens to reign in these useless thoughts. It might seem ok to feel this way occasionally but I know that if I allow myself to indulge in this type of thinking, I could be buried alive by the resulting avalanche of negative emotions, memories and thoughts. My life has been difficult at times, downright depressing at others. I choose to not dwell upon all of that as it leads me nowhere. I prefer to look to the future and focus upon all the good, wonderful things in my life, which in truth, vastly outweigh the bad.

After allowing myself to think of the terrible injustice of it all, I can equally quickly remember that I am lucky to be alive. Without surgery, the aneurysm would have killed me, probably within one short year.  Without the stroke in 2007, I may never have had the aneurysm identified and without that, would never had known of the lethal threat it posed me.  Rational Veraina knows and deeply appreciates this but every now and again, it is hard to feel grateful for having a stroke and brain surgery.  Just every now and again.

Pirates Need Groceries Too

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.

I digress.

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.

 

Have You Seen My Motivation?

It’s usually so easy for me to find. I wonder where it might have gone or why it left me behind. Within oceans of pain and injury, my motivation is an island of determination upon which I usually cling. How can I move forward without it? My mind seems numb in its absence?

Have you seen my motivation?

The Joys of Family

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.

Liberation – Walking

Yesterday I ventured out on my first un-escorted walk. This felt significant. As I donned my shoes and cap, my mum watched on with a look of concern. To be fair, it’s the expression she usually has, when looking at me. Someone please tell her I’m joking or I’ll be in trouble.

I reassured her by saying I’d have my phone with me and would call if I ran into trouble, to which she replied “I’ll scuttle to the rescue in my fluffy purple slippers.”

“Wonderful”, I think I said and left before the mental image forming in my mind could become any more vivid.

Fluffy Slippers

Slippers

Jason had suggested a walking route he believed would pose the least problems for me and as I approached the end of the driveway, a small rebellious voice bubbled up inside, discarding his advice, saying I’d be fine walking through the neighbourhood as we had been doing (just as long as I avoided the blood hungry pooch!).

I stood at the threshold of the drive where it meets the road and surveyed the quiet street we live upon. As if in conspiracy with my husband, there seemed to be rather a lot of activity. To my right there were tradespeople working on a neighbour’s home, whilst further down the street a large truck with a cherry-picker was holder workers in place as they chopped down sections of a large tree overhanging the footpath, to the left the mail man was riding his motorbike in the course of his work and to top it off a bloody neighbor was driving up to their house. Seriously! Our normally quiet street seemed overly busy to my brain and I knew walking past and around all these hazards with limited vision was too much for me to manage on my first walk alone. I sighed and turned toward the sensible route Jason had suggested and tried to pretend he wasn’t right. What can I say – stubbornness rears up at the dumbest times!

As I walked over some unsteady ground I took a moment to remind myself of the deficits I needed to be aware of and the ways in which I could compensate for them. Examples of this internal dialogue include the following: walking on uneven ground, lift my feet higher to prevent tripping on something if I have misjudged its height. Again, walking on uneven ground, concentrate when putting feet down, so I can use my muscles to compensate for any unseen dips in the ground.

Approaching the curb of the main road I paused to ensure I was being safe. I turned my head and body to the right to see fully what traffic may be coming or pulling out, and the same again to the left. I could see what might have been a car coming and consciously listened to get a sense of how far away it was and its approximate speed (running is not an option for me at the moment).  As I listened oh so carefully, a plane on approach to the airport flew over rendering my ‘active listening’  pointless.  Once the plane was gone, I began the whole checking for traffic thing again. At this rate, I thought I might get home in time for breakfast the following day. Eventually I made it over the road and began my walk. The MacDonnell Ranges looming over the few houses nearby, the azure sky and lovely warm sunshine doing wonders for my mental state. A chill breeze reminded me it is winter but I did not mind it as it refreshed me.

Mac Ranges Looming

Mac Ranges

I walk, slower than I have recently, a few days off and a very bad pain day the previous day seems to have left me a little weaker. My hip and leg fatigue quickly, dictating how far away from home I go but still I enjoy the walk, being out in the sun and fresh air, being yelled at by birds protectively parenting over their young hatchlings.  Other birds sing from the grasses and trees lining the street. I love this place. It restores me.  I am grateful to live somewhere this beautiful.

MacDonnell Ranges

MacDonnell Ranges

I turn earlier than I thought I would need to and amble back towards home. I told mum I would be about 20 minutes and check my phone for the time, not wanting to worry her. As it turns out, I arrive home without incident at the promised time. I am pleased to note that I am not tired when finished. I walked 1.5Kms and that’s ok.

Mum greets me at the door, “Right on time, how did you go?” I tell her it was fine and I managed without incident. I note she has dressed since I left, as she continues, “Oh good, I didn’t have to be the Purple Flash then.” I note her purple top and similarly hued pants. The thought of needing to be rescued by my 75-year-old mother is not my happiest but I appreciate the back up.

Yesterday I went for a walk, alone, for the first time in six and half weeks. It felt significant because it was. It was liberating but also reminded me of what I am working with.

Tears of Fire

I was watching a touching story on TV this afternoon about a couple, running an animal sanctuary in Tasmania and how they rescue animals and care for them voluntarily, when the story turned to the terminal cancer diagnosis the woman had received.  It got pretty sad after that and I welled up.  As the first few tears fell to my cheeks, searing pain exploded in my right eye, the intensity, startling and severe enough to stop my crying, instantly.  It felt as though a piece of wire, glowing red from being heated was threaded into my tear duct and moved around behind my eye-ball.  Holy hell did it hurt!

I guess I should say that no, I’ve never been tortured by having super heated wire poked in my eye, but damn it, that’s the best way I can think to describe what I felt.

Something else to mention to the surgeon this week – unless anyone reading this is an eye doctor willing to throw out some free advice.  Just asking…

Terror In The Suburbs

This weekend marked six week’s since my surgery.  I am at the half way mark of the driving restriction (if my vision returns to normal in that time), and I am much more independent around the house, even cooking my first dinner last night with some assistance from my mum, whom has come up to stay a little while and help out.  I am independent enough to be causing her some frustration at not being allowed to help out too much.  Every little bit helps though, and having her here means Jason has returned to work full-time and can catch up on his projects and have a break from caring duties.  He has been nothing short of amazing.

At the six-week mark, I am now walking 2.2 kilometers each day, making my own breakfast and lunches and helping with dinner.  When we first returned home and started little wobbles (walks) outside, I could only manage 0.7 km laps up the street and back.  I have increased my pace sufficiently to now be getting breathless, indicating I am actually getting some cardiovascular benefits.  I’m kinda pleased with the rate of improvement in only two and a half weeks since returning home.  Our townhouse is quite large so moving around it has also meant a huge increase in the amount of walking and navigating I do, which all goes to help with endurance and confidence.

I have not yet gone walking outside by myself but am feeling more stable within myself and am having days where my leg weakness isn’t a restriction.  I am hopeful of being able to take myself on an un-escorted walk soon; although, I am acutely aware that my restricted vision still provides limitations as demonstrated on our most recent walk around the neighbourhood.  Jason and I headed out and decided to try a longer route. We were walking down a street previously unexplored, heading toward Stephens road, as it is ideal for a walk, running parallel to the MacDonnell Ranges.  Excellent walking surfaces with exceptional views, what more could we want?  So, we were walking down a little residential street, when out of the blue, a large, unhappy dog began snarling, growling, barking and trying to bite me from under its owner’s fence.  I will attempt to explain how my lack of vision made this scenario so much worse for both Jason and me.

Jason was walking on my left hand side, as we are building my confidence by not having him on the blind side.  The grumpy dog was on my right hand side so when it went ballistic, I couldn’t see it.   The first I knew of any problem was the noise, followed by the slightest hint of frenzied activity at the very bottom of the field of vision of my left eye.  I didn’t have time to think, my brain went immediately into fight or flight response, and I kid you not when I say that I leapt into the air and began to climb Jason as though he were a tree.  I actually had both feet off the ground in my attempt to get away from whatever was attacking me.  Of course poor Jase also had a scare so was leaping in his own fear.

A few seconds later, I was able to recognise the sounds of a dog and look at it and assess the risk.  The poor dog, presumably out of boredom or a desire to taste human flesh, had dug a hole beneath the fence to the street and was straining to escape whilst snarling and barking.  I cannot stress enough how much of a fright it gave me.   I asked Jason if getting my heart rate going so fast counted as a work out.  He made me finish my walk.

As we were coming home (along a different street), I asked Jason if it was the dog or me trying to climb him that had provided his scare.  He replied, “I don’t know.  All I know is I was scared!”   Relaying this tale to my mum upon our safe arrival home, I told her that if we go walking that way again, “I’m taking a lamb chop as a peace-offering”.

Anyway, I am off to see my local physiotherapist this week to talk about accessing hydrotherapy in town and see if there are any exercises I could be doing to get my jaw muscle moving better.  I tried to eat an apple the other day and failed miserably, barely breaking the skin.  Whilst I don’t mind eating an apple with a knife, I’d much rather have the strength and range of movement of a normal jaw.

Whilst I am not pushing myself extra hard on the exercise front, I feel as though I am healing and recovering well.  The neurosurgeon is in town at the end of the week doing an outpatients clinic at the Alice Springs Hospital and I will be seeing her on Thursday for a routine six-week postoperative follow up.  My wound is mostly a well-healed scar with only one section having opened up a little to form a redder wider scar.  All the stitches are out and the swelling in my forehead has reduced to the point that I can clearly feel the screw there holding in the skull flap removed during the op.  I still have swelling of the face beside my right eye.  I have been sleeping upright since the surgery due to all the swelling but last night thought I would try sleeping flat.  The first time I tried to do this was when I left hospital and my head immediately felt horrible, thus I abandoned the idea.  Last night my head felt ok resting on a pillow although not on the surgery side.  This morning however, I woke with an egg of swelling beside my eye; something to mention to the surgeon.

I am able to read a lot more at this juncture although I do need to be careful so as to not over do it, as I had a rather unfortunate vomit episode the other night involving a lovely soak in a hot bath.  It turns out that if I read enough to make me feel dizzy, laying in a bath without my eye patch on, with flickering light from candles and rippling water, makes me rather unwell.

Despite the moments of fingers curling making my left hand useless, the continuing double vision and patch wearing, and moments of boredom, I think I am doing rather well.  Six weeks and counting.

To Market, To Market

Saturday night I asked Jason if we could go to the markets on Sunday (I can’t drive or navigate new places solo yet). He said if I was feeling up to it, we could. Sunday morning I confirmed I still wanted to go.  For most of the year in Alice Springs, a market is held each fortnight in the Todd Mall. It’s a lovely market and I enjoy going and seeing all the pretty things for sale, mingling with the crowd, sometimes buying a coffee, sitting on the grass out front of the church, alongside the Aboriginal ladies with paintings to sell and watching the world go by.  I usually go alone or with a friend, as Jason isn’t much of a market person. Despite this, he agrees to take me.

I am happy at the thought of getting out of the house and change into jeans and a warm top, stopping to even put on some earrings, a bracelet and a pretty blue scarf.  I’m dressed and I thought ready to go, but as I gather my wallet and things, I slow, my feet dragging in response to some unknown anxiety.  I stop in the kitchen, hands on the cold bench top, taking big slow breaths.  Jason gives me the hurry up signal and I apologise telling him I’m feeling anxious.  He tells me he knows why I’m procrastinating and reminds me this was something I wanted to do and was excited about, “So get your bag and let’s get going.”  I realise this may sound a tad harsh but pre-outing nerves are not new in our home and he knows how to spot them in me.  By telling me what to do next, he gets me moving, forward towards that which makes me anxious, knowing that generally, once I arrive at our destination, I am fine.  This day I think I am anxious about being in a busy, changing environment and around crowds.  I wonder how I will manage, being effectively blind in one eye, and still a little unsteady on my feet.  Nonetheless, off we go!

As we approach the mall from the car, I spend the first few minutes just taking in my surroundings, the noise, the people, the colours, the music, the stalls and all the associated conversations. “Okay, I think to myself, it’s not overwhelmingly loud, I can mange this.”   As we begin navigating people, pets and stalls, I realise there are two other factors I need to consider, lighting and ground surfaces; both are highly changeable depending on where one steps.  The sun, whilst delightfully warm, blinds me completely and I stop and start attempting to clear my vision before moving forward, my hands reaching out hesitantly, feeling to ensure I don’t walk into anything.  I am also unsteady on rough surfaces, in addition to difficulty with depth perception, so the ground in the mall, with its curbs, steps, tiles and changing surfaces serve to challenge me with every step.  At times, my sole focus is on not tripping or falling over.  I’m sure anyone could understand why the thought of falling and hitting my head, fills me with cold dread.  I am however a believer of the ‘prophecy of self-fulfilment’ in that if we focus long enough upon an outcome, we can generally find a way of causing said outcome.

I take a few quiet moments to quell my anxiety and remind myself that I know the mall well and love this market. Jason will help by holding my right hand and making sure I don’t walk into anything I can’t see on that side.  I grip his hand and ask him to hold on a little tighter than usual as it feels more secure and we head out.  Jason sees a stall selling African hot sauces and can’t resist trying some.

African Hot Sauces

Hot Sauces

We steer towards the stall and both miss the step down off a curb.  As we land heavily, Jason laughs and apologises for not seeing that one. “Some bloody seeing-eye dog you’d make.” I reply.  We’re okay though and that bolsters my confidence in navigating this ridiculously busy place (Alice standards of busy apply).

Slowly as we wander the street going stall to stall, I relax, even pulling away from Jason at one point to explore a stall where I thought I saw craft kits on display, only realising once my curiosity had been sated, that I had lost him.  I look for him with increasing alarm.  Where the hell could he be?  I look more slowly this time, and see him buying food two stalls down on the other side.  Not sure that he knows where I am, I head off, looking from left to right, carefully manoeuvring around the people between us, which is thankfully only a few. I reach his side and accuse him of abandoning me, to which he reminds me, it was I who ditched him. I guess I felt braver…when I see something I might like to buy.  Who knew retail therapy could cure anxiety?

Hubby Helper

Hubby Helper

Coffee, Doughnuts & Sunshine

Coffee, Doughnuts & Sunshine

We proceed and I get a coffee whilst Jason buys me a bag (a whole bag!) of steaming hot cinnamon doughnuts and we find a seat in the sun. I feel happy to be outside, in the sun, with Jason, having conquered my fears and eventually relaxing enough to enjoy this outing.  We bump into a few familiar faces whilst here and they all express surprise to see me out and about so soon after surgery.

Yeah, I guess I am doing pretty well at the 5-week mark. I think I will excuse myself for having some anxiety.  I’m doing great and I love Jason even more for hustling me out the door to go do the things that bring me both opportunity and joy.

Sensation

I sit here writing, sipping a scalding hot cup of tea, creating a world with my words when I am distracted by sensation.  Sensation in my head.  I pause, is it pain?  I look to the clock to see if I am due more pain medications but am unsure as to what it is exactly I am feeling.  Wait, there it is again.  It’s along my surgical site, running along the scar, I reach with tentative fingers to check how things are.  I feel hair shaven growing back in patches, the lumpy ugliness of scar tissue and the painful raised spots that identify the tiny titanium screws holding my skull flap in place.  All is as it should be but what is that feeling?  As I begin to think it has passed, it comes again this time I track it, beginning higher on my head in the area of scalp that has remained numb ever since surgery and feels particularly odd whenever it is touched, like a metal cap has been glued into place there.  The sensation strikes downward towards the scar and races along its line.

Feeling…I must be getting some feeling back to those areas left numb from cut nerves.  As unpleasant as this electric pulse feels, it signals what I hope it another stage in recovery.  The nerves may be firing at random as they begin to function again.  It is only five weeks since the surgery, so much earlier than I would expect the numbness in my head to resolve.

I return to my prior activity and monitor this new development to make sure that should it morph to pain, I will take the meds as prescribed, but for now, just for now, I will appreciate this weird sensation as healing.