Birthday Reflections

 

Light reflects off the vodka cocktail in my hand, the beat of jazz music pulses through me, fingers tapping in time with the drums, I am happy, I’m celebrating turning 45 and I am happy. I have a table full of new friends with me, watching incredible musicians generate a spell over a room crammed full of appreciative people, in a place I have never visited before and I feel good. I’m 45; wow! I think I’m officially pushing middle-aged now and like everyone before me, with our brains permanently set at 25, I do not feel ‘middle-aged’ or at least what I used to image middle-aged would feel like.

Caught up in the feel-good haze of this moment, I reflect a little, thinking of the last five years since I turned 40. Another of those milestone birthdays that in all honesty, I was grateful to reach. Having had a stroke at 36 and spending quite some time working to avoid another (sadly an all too common occurrence for stroke survivors), I do carry an appreciation for having lived and not having suffered further brain injury and deficits.

Living with an appreciation for living though has not been as simple as I might have thought. Daily living does take the shine off, further health issues have certainly given me moments where I’ve wanted the pain to end, wished for a different, dare I say, better, life. I am after all, only human. What I do though, is try to celebrate the things worthy of celebration, acknowledge the beauty and pain in life and tell those around me how much they mean to me, be it a thank you note, saying “I love you” or signing messages with xx (kisses), these small gestures help keep me connected and I hope ensures the people I care about, know it.

We celebrated my fortieth birthday in true Central Australian style, hiring a bus to transport my guests to Ooraminna Homestead, a real life cattle station a short ride out of town on rutted, rust red roads. There was so much rain that summer the ‘Red Centre’ was indeed quite green, full of new growth and abounding with wildlife. The road to the Homestead was so muddy, a backhoe was sent to greet the bus and lead us to our destination, ensuring a handy rescue should our vehicle become bogged. Friends old and new, local and distant congregated at the most perfect of venues, watched the sun set the surrounding rocks to flaming oranges and reds and set down on another brilliantly hot day in the desert.

I have such clear memories of that evening, surrounded by friends, many whom had traveled from interstate and whom upon meeting one another for the first time, kicked off new and lasting friendships amongst themselves. I could hardly wish for more.  I recall standing with a glass of champagne in hand, twirling slowly in the warm night air, music of my choosing playing in the background, looking upon the people around me and feeling blessed to be in such company and to have so many good people share in my celebration.

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I was happy and knowing it, I made my way to Jason’s side, looked up at him with gratitude and a big grin, and told him how happy he had made me by throwing such a wonderful party. We stood together for a short while, hand in hand, watching our mad-capped friends party.

To know, really know, when I am happy and to take a moment to dwell there is a gift of my post-stroke (and brain surgery) life.

Back in the jazz lounge, my mind gently wanders through the major events of the past few years. I am known to joke that each new year will finally be a ‘quiet’ year for us and whilst I often feel as though I am unable to participate in life as fully as I would like, the past five years do feel as though they have had more than enough excitement in them to last a while. Big picture, since I turned forty, Jason and I have had two interstate moves, Alice Springs to Canberra and back again and one international move, Australia to the USA. I have started 5 new jobs, earned promotions, dramatically increased the number of hours I can work per week and now await the approval of the US State Department for an American work permit; whilst setting up the foundations for freelance writing work.

I lived alone whilst Jason undertook a posting to Western Australia and had two surgeries in that time. Thankfully my mother was willing and able to stay a while and help nurse me back to health. A trip that would ultimately lead to her retiring upon returning to work and the realisation she didn’t want to be putting up with all the crap associated with working in community health at 74 years of age! Such things will happen after spending six weeks enjoying sunny days, afternoons in second hand book stores followed by coffee and a few laughs (or listening to me rant about the level sexism inherent in Australian culture). Perhaps not so much; but it came with the territory I’m afraid. Anyone remember what our first female Prime Minister had to contend with?

I do, however, digress.

In these past five years, I nursed our beloved cat of 15 years through her final months until her dignified end, under went brain surgery and labored through a long recovery, but not before planning and spending an entire month camping and four-wheel driving our way through the Kimberley region of far north WA with friends; an adventure never to be rivaled in my book.

Since turning forty, I have lived in four different houses, set them up and packed them down again and best of all I have met and made many new friends, whilst strengthening my existing relationships.

Life can be scary and sometimes a little too action packed for my liking but I do value the many new experiences I have had these past five years and as I turn and look at the women seated at the jazz lounge with me, sipping my cocktail, I smile to myself and wonder what the next five will bring me.

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Ready for the Next Five!

 

 

 

 

 

 

 

Crappy Complications (a flashback to 2014)

I never intended to take a break from writing about my recovery but alas the events of the last three months of 2014, conspired to render me mute. I hope that anyone wondering as to my progress assumed I was distracted by a return to full health and was busy living my life. This was, unfortunately, not the case. I have no desire to document everything that befell me in the last three months of 2014 but would like to provide an accounting of that time; it is only reasonable to have an accurate record to reflect upon. Who am I kidding – it’s for catharsis!

So dear friends, readers and other neglected persons let me share with you the events that left me unable to rally a defense.

My last post in October 2014, (five months post-op) was about the early signs of full recovery and I genuinely felt on the threshold of improved quality of life, despite continuing painful headaches and funny (new) episodes of dizziness and passing out. To the latter, my GP assigned blame to Morphine, dropping my blood pressure too low, so that whenever I stood up I became faint. Once these episodes reached the point of me having blackouts several times a day and having to lie on the kitchen floor until my vision cleared and head stopped spinning, the GP agreed to cease the Morphine. He put me onto an increased dose of Tramadol, adding a slow release version morning and night in addition to fast acting four times a day.

My physical recovery had been continuing despite the ‘episodes’, albeit slower than it should have. Mid October I even baby-sat a friend’s three-year-old boy for half a day. Despite a very active few hours, I felt great and was really pleased at how well I’d managed (as well as said boy child surviving intact). Finger painting, decorating a robot helmet, being chased around the house by child wearing robot helmet, reading; all this was within my capabilities and it was marvelous.

The next day however, in the kitchen at home, I stood up after retrieving something from the fridge and my head spun, the world began to disappear as darkness clouded my vision and like so many unfortunate women in the movies, I swooned. I felt control of my limbs flee and wondered, as I begun to slide to the floor, if I could protect my head from any impact. Jason, also in the kitchen saw that I was not well and grabbed me around the waist, supporting me as my strength vanished. Each blink of my eyes showed a darkening room as I sagged, a dead weight in his arms. Blackness followed.

After only minutes, blurry vision was restored and Jason half dragged, half directed me to the lounge. I lay my face gratefully against the cushions, relaxing knowing it was safe now to succumb. Lying there, weakened, I became aware that my left arm was behaving oddly; bent forcefully at the elbow, tucked against my chest and fingers curled tightly. When it began to twitch in spasm, I felt a flicker of fear at the familiarity of these symptoms – exactly like when I had a stroke in 2007.

As quickly as the fear rose, I stamped my reaction down, seeing no good purpose in it. I did however mention the symptoms to Jason and we concluded it was just a response to the funny ‘episode’ I’d just had. We both know that anything that challenges me physically can see a return of the weakness on my left side. Later when I began moving about, I was disappointed to find I also had developed a pronounced limp, all the joints of my leg were locked up and my hip swung forward in an uncontrolled bowing movement. But again, we put it down to fatigue and went about our day.

We have talked about that day since and realised that the stroke of 2007, changed so much for us both, we have a new sense of ‘normal’. With brain injury so many things can impact brain and body functioning, a late night, too much noise, a head cold, over exercising; all this and so much more can strip me of my strength, coordination and endurance. A recurrence of weakness and fatigue is the new normal.

When the deficits had not resolved after a few days, I saw my doctor who upon physical assessment confirmed that I was presenting with hemiparesis (weakness or paralysis affecting one side of the body) and that my hip flexor in particular, was not switching on. His initial thoughts were that I had experienced a severe loss of blood pressure and had extended that by not fainting (laying down immediately) and may have triggered a vasospasm* in my brain. In short – I may have had another stroke.

He promptly sent me to the hospital Emergency Department (ED) with a letter requesting an urgent MRI. Alice Springs Hospital had only just installed an MRI machine in the previous six months and rumor had it that the waiting list was already quite long.

I waited three hours to be seen but once the doctors examined me and took my history, there was an increasing sense of urgency on their behalf. They contacted the Neurosurgery Unit at the Royal Adelaide Hospital who asked them to perform a CT Angiogram to ensure the aneurysm clip installed in May was still in place and, there were no brain bleeds. This was done and thankfully all was clear. I was however admitted to hospital as the doctors felt I still needed the MRI and access to rehabilitation services.

The following morning, as Jason arrived with a change of clothes for me, two staff appeared at the end of my bed and following a rushed introduction, my impression was that one was a doctor, the other a student doctor; the Saturday morning ‘B team’, a friend would later call them. They examined me, in a perfunctory manner, noted the CT was clear and advised I would not be having an MRI, as they felt the CT was sufficient. Granted, I was a tad sleep deprived but I recall thinking how only an MRI would clearly show the deep structures of the brain (such as) where my first stroke occured but okay.

They then inquired as to my walking stability and I informed them nothing had changed overnight. They had me walk for them; my glamorous hospital gown trailing upon the ground, comically oversized. I took four wobbly, slow steps and they stopped me; four steps, I kid you not. That was the extent of their walking and stability ‘assessment’.   For goodness sake, they couldn’t even see my legs in order to assess functioning. I wobbled back to the bed as the doctor announced in a dismissive tone, “Oh well, you don’t really need rehab do you, I mean you’ve had a stroke before so you know what to do”. “Yes, get the hell out of this hospital”, I thought as my eyebrows climbed their way towards my hairline.

I confirmed they were saying there would be no MRI or rehab support (the reasons I was admitted) and they left (without waiting to see if I would stay or go). My decision was a quick one; I was already feeling weaker from a day sitting around the hospital instead of doing as much as possible for myself at home. If there was to be no support or further tests, there was zero point in staying.

I returned home no better and without answers.

My physical weakness worsened and the rate of the episodes of passing out increased dramatically.  This state of affairs continued for some time and to be honest, I struggled to maintain my optimism, finding the idea of further brain problems emotional paralysing. Living with worsening episodes, we nicknamed ‘brown-outs’, slipping into near unconsciousness up to four times a day, with the only explanation being “something was going on in my brain” (as my GP put it). I became so unwell I stopped being able to do almost anything.

This was a difficult period for us and we largely kept things to ourselves as we simply had no idea what we were facing. My mind was filled with terror at the prospect of new brain damage or neurological deficits and my world contracted until I had to schedule my entire day around the recurring episodes. My mental health at the time deteriorated, and my physical recovery quickly went with it.

Then I had an episode in public and things escalated quickly. Whilst getting groceries with Jason at ‘Woolies’ one afternoon, I began to feel unwell, sounds and colours distorted, becoming harsher, crashing upon my mind like storm churned waves; thinking became difficult as dimness crept slowly into my peripheral vision. Feeling as though my mind was shutting down, I didn’t reach for Jason or utter a word. Backing slowly, groping blindly for purchase, I bumped into the shelves of the cleaning products isle and with a sense of self-protection used them to ease my body to the floor.

I lost touch with time and in the haze that was now my mind’s workings, there were no thoughts of embarrassment or concern, I merely waited the event out, some primal part of me knowing it would pass soon and I was safe, and that that was the only thing that mattered.

Slowly, I returned to the world around me, to see Jason looking down at me, asking if I was okay? He helped me to my feet and shepherded me to the front of the store. We made our way to the small food court and I rested on a bench seat as Jason got me some water. As my head cleared, I tried to reach for the water bottle on the table directly in front of me. Nothing happened. My arms and top half of my body wouldn’t move, I felt as though I was made of molded plastic with no moving parts. I tried and failed to move my arm again and felt a flash of terror. ‘I’m having a stroke’, I thought, the words loud in my mind. “I can’t move my arms,” I told Jason. He looked at me seemingly confused. Then I said words no one has ever heard me say and they lit a fire under him, sending him into immediate action – “I think I need to go to hospital”.

Jason was on his feet and at my side instantly helping me to lie down. As he turned to get his phone, a police officer walked by and I heard Jason, his voice oddly strained saying, “My wife may be having a stroke, can you call an ambulance?” The officer complied and only a short time later one arrived and I was rushed into a high dependency bed in the Emergency Department. By the time I arrived, I could move my arms and body and was feeling okay but had a ‘brown out’ episode in front of the doctor a short while later. It seemed that whatever was wrong with me was escalating.

This time when admitted to the hospital, I was taken seriously and kept in for four days whilst the Alice Springs medical team liaised closely with the Neurology Department at the Royal Adelaide Hospital and eventually figured out what was happening to me – it was a severe drug interaction.

My doctor had put me onto a new pain medication (Tramadol), both an acute (every 4 hour dose) and a longer acting slow release dose. Initially, I was taking long-acting Morphine with Tramadol throughout the day, but my doctor (not realising a drug interaction was occurring) thought the morphine was causing my blood pressure to drop too low (causing my first few episodes). Thus he changed the morphine to the slow-release Tramadol and this is when I really started to have problems. Tramadol, when combined with a particular nerve pain medication (I have been on for years for a spinal nerve injury) can cause Serotonin Toxicity. Serotonin toxicity or syndrome severely affects muscle function, disrupts signals from the brain to the rest of the body, causes seizures, serious mental health imbalances and the nervous system ceases to work properly. If left untreated it can lead to death. This interaction was responsible for all my symptoms, including the hemiparesis. These medications should not be prescribed together.

After reviewing my medication log and diary of events, we could see a correlation between a worsening of my symptoms with every increase or change in this medication. The cure – stop taking it but gradually, as the serotonin toxicity worsens with every change in medication dose, even a reduction.

The next month was dreadful as every time I dropped the dose, the side effects increased dramatically, leading to more episodes of dizziness and passing out and many other unpleasant side effects. Each time I dropped the dose, I would have one to two days whereby I lost control of my body and spent most of the time resting on the couch, feeling horrible whilst knowing that ultimately this was the path to regaining my health and sanity. My mood throughout the Serotonin Toxicity was nothing short of feral and my cravings for chocolate took on an obsessive trend. I joked (later) that for Jason, coming home from work was akin to opening the door and being greeted by a large and mightily unhappy Rottweiler dog. His only path to safety lay in running into the lounge, throwing a bag of Cherry Ripes at me and running to the other end of the house until Rottweiler Veraina slipped into a chocolate induced, friendlier mood.

I am happy to say that we successfully navigated this treacherous period and I begun to recover. The doctors at the hospital were pleased with my commitment to reducing the drug dose (as many people stop reducing once their symptoms worsen).  By Christmas I was only having the occasional dizzy spell with no full-blown episodes and I begun to be able to do more. All that said though, it would take another two months before I felt recovered.

It took me a long time to regain my post operative recovery momentum after such a dreadful complication and I was angry at my GP for quite some time.  The only good to have come of the whole mess, is that he now knows a lot more about checking possible interactions to the medications he prescribes.  I just wish I hadn’t had to be the ‘crash-test’ dummy!

*Cerebral vasospasm is narrowing of a cerebral blood vessel and causes reduced blood flow, which may lead to delayed ischemic deficit and cerebral infarction if left untreated.

 

I Knead This

Today I spent three hours baking. Baking for the simple joy of it. I tackled a Nigella Lawson recipe I have read and re-read, its allure seemingly irresistible but the complexity of it holding me at bay. I have had the cookbook open on the same recipe for two weeks now and I linger over it each time I enter the kitchen, running through the ingredients list and instructions, working through the experience, step by step in my mind, looking for a description of anything too difficult for me to perform, given my current dexterity and strength limitations.

Today it seems was the day. Damn it, I thought, standing facing the cookbook as though it were a living entity I needed to conquer. Nigella has never let me down and the end result does sound delicious – even if it is unpronounceable. I mean what is a schnecken anyway?

My mum taught me to cook, beginning when I was quite young. It was something as a child I insisted I wasn’t able to do. My mother though, was a wonderful baker and whenever my brother and I went to school with some delicious home baked treat in our lunch boxes, we were assured to have options for trade come lunch time. I have a vivid memory of sitting on a small brick fence while several other kids held their lunch boxes open for my inspection. These kids were the ones who had store bought treats (the kind we didn’t have at home) and I ‘ummed’ and ‘ahhed’ over these offerings knowing I could choose anything I wanted because of how good my mum’s baking was.

I like to think to myself now that if I had kids, I would be sending them to school with treats that would also put them at the top of the food barter totem pole.

Basil Brush CookbookMy first ever cookbook was ‘The Basil Brush Cook Book’ which looks and reads entirely like a children’s storybook and I have vague memories of baking something resembling Anzac cookies called, Daddy’s Favourite Cookies. This delightful part of my baking history was restored to me only recently and it sits in its rightful place now with the rest of my cookbooks.  Did you have a copy as well, growing up?

When my confidence in the kitchen was still poor, my mum found another small cookbook that had recipes of only five ingredients and straightforward instructions, as thus I cut my teeth and my confidence grew. I was best known for my banana muffins. Nowadays I cannot imagine not cooking but more so baking; it is in my blood and my heart. I have felt quite disconnected from cooking since coming home from hospital as work in the kitchen takes time, precision, dexterity and usually a lot of bobbing about, all things my head, hand and eyes have not appreciated.

As I have improved though I have returned to baking simple things. A few weeks ago after feeling a bit low and as though chocolate was the only possible cure, I found myself in the pantry gathering up ingredients for a batch of chocolate biscuits (another Nigella recipe) and they were delicious, velvety and rich. Rather unfortunately though they gave me indigestion so horribly that I packaged them up and sent them with Jason to his work place where they were both appreciated and devoured. Much more gratifying than eating them all myself!

What I re-discovered though was the simple joy one can find in seemingly mundane activities.  Baking is my art, my solace and my greatest pleasure and as I studied this morning’s recipe, I decided that if I paced myself, I could end this day with something tangible to show for my efforts as well as something delicious to eat.

As I said earlier, the entire production, yes, production, took three hours and provided me with a couple of physical challenges, moments of “you want me to do what?” a fantastic rehab workout with 10 minutes of dough kneading, and a boost in confidence when the end result was, as promised, looks and smells incredible and are in fact just as Nigella describes. “They are like cinnamon buns, only more so. They are stickier, puffier, gooier and generally more over the top.”  Imagine a hot cinnamon bun covered in syrup made from butter, sugar, maple and golden syrups, with a topping of chopped walnuts. As Nigella says, remove from tray and apply to face.  Admittedly, I had to have a little lie down before that part!

I wanted to write about this I think because I felt whole while baking and got a great sense of satisfaction by producing something. It takes me out of the merry-go-round of rehab for rehab’s sake and whilst something as complex as today’s baking challenge provides me with great rehab, it isn’t its purpose.
Maybe I should do a ‘Julie & Julia’ gig and commit to cooking every recipe in my beat up copy of ‘How to be a domestic goddess – Baking and the art of comfort cooking’.  I don’t think Nigella had recovery from brain surgery in her sights when she wrote it but by god, it is certainly providing me with great comfort and joy.

 

Learning Through Pain

I woke this morning with a headache, a seemingly innocuous event in itself except I have not woken with pain in my head for nearly two weeks now.  The first few days without pain as the first thing to register in my early morning grogginess, were treated with a wary suspicion, “Will it last?” I’d ask myself. But the glorious pain-free awakenings continued and soon became the welcomed next stage of recovery.  Oh the relief of waking, stretching and sighing as no pain haunted my skull first thing.  After close to four months of constant headaches, this was a much-appreciated respite.

This morning though, I woke with pain in my head but I still took a moment to stretch and give the darn thing a chance to leave. Propped on the edge of the bed the pain increased and extended into the bones around my right eye.  As soon as this happened, I realised I haven’t had bad pain around my eye for a little while either.  It still aches some days and I cannot tolerate any pressure in the area, but it has been improving.   In order to recognise this subtle improvement though, I needed perspective and this is what this morning’s strong pain gave me.

I medicate myself appropriately and begin attending to the important activities of the morning namely opening up the house to capture the beautiful desert morning air and making coffee.  As I move about these tasks, I ponder the pain.  I am no stranger to pain particularly after my spinal injuries and rehab where I was treated by a pain specialist and undertook pain management lessons to learn how to live with debilitating nerve pain.  The pain I have had post brain surgery has persisted for longer than I thought it would and at an intensity that has surprised me.  A bad headache debilitates my capacity to think as well as move, prevents me from reading, watching television or even listening to music and can with persistence leave me lying upon the bed with ice packs fore and aft.   I recall reading that it takes most people up to a year to feel they are returned to their pre-op ‘normal’ and that many people continue to have headaches well up to six months.  I had forgotten this and listened when my surgeon told me the headaches would last only days or weeks.  Surgeons!  I know better than to listen to surgeons about recovery! They are about as reliable as used cars sales people when it comes to recovery time.

As I think about this morning’s pain, I use the mindfulness approach to tune into and distinguish differences in sensation. In using this approach to pain the goal is to observe it, take a breath when it strikes but not react emotionally nor even physically. The goal is to distance oneself from the pain and what we tell ourselves about it and to recognise pain simply as sensation.  Through this we also acknowledge that pain is there for a reason and it is important when recovering from serious surgery or injury, that we learn when to heed the call for rest and when it is ok to work through it.  This is an exceptionally fine line and in order to navigate it, we must be tuned in to our bodies and understand the message the pain in sending.  This helps prevent one becoming distressed by and merely reacting to pain. It takes practice but it helps enormously, when you remember to do it. I have been reconnecting with this practice (thanks to a reminder from a friend) so this morning whilst I took the appropriated pain medication; I also explored the sensations and refrained from telling myself negative things about it.

I have over the past weeks clearly identified the variety of headaches I get and learnt some of the triggers for them, enabling me to better manage or even delay them. I still have the pain and it still causes me to modify my behavior when it strikes hard but I don’t worry about what it might mean, don’t feel sad or down about it. I’ll admit to occasionally still feeling frustrated that I can’t just do what I wish to without planning around this companion but largely, I accept that it is a part of this journey and for the time being, me.

 

 

 

 

 

Recovery Reflection

“Both abundance and lack exist simultaneously in our lives, as parallel realities. It is always our choice which secret garden we shall tend. The invisible underbrush holding us back is our own thoughts.   When we choose not to focus on what is missing from our lives but on the abundance that’s present – love, health, family, friends, work, and personal pursuits that bring us pleasure—the wasteland falls away and we experience joy in the real lives we live each day.” Sarah B Breathnach (2005)

A little over a week ago I wrote a post, laden with self-pity. It wasn’t my finest work, filled with errors and morose content. After posting it, I was plagued by a constant worry at the back of my mind that eventually saw me pull it down a few hours later. Asking for help can be challenging enough but to do so publicly, left me feeling vulnerable. I forgot that my email subscribers receive every post in their inbox moments after I release a post, negating my attempt to hide it.

At the time, I put my morose mood down to having a difficult week being unwell with a persistent sinus infection, which added greatly to my head pains, which in turn fueled my sense of recovery paralysis. But an interesting thing happened. A number of people contacted me, each with their own thoughts of how we could help motivate one another. In each correspondence lay sign posts for me to the many tools I already have at my disposal but have been neglecting to use or apply, and to new sources of inspiration and assistance.

This past week has seen a friend in Brisbane and I become walking buddies in that we phone or text one another at an agreed time to prompt us to begin our scheduled walks. It has been easy to set up and wonderfully effective in getting us out the door as promised. Another friend identified a few things in her life she would like to dedicate more time to and has since made a change to her schedule, providing her with time for walking in the mornings. She has also spoken with her wife about some of the priorities she wishes to pursue and was met with nothing but support. Yesterday a friend in Melbourne agreed to be my meditation buddy, so we can encourage one another and have someone to speak with as to our experiences. And my marvelous mother committed to walking a bit more in support of my efforts and has already surprised herself with how far she can go. She recently told me she, “continues to stagger along and despite some sunny days, still gets a sweat up shivering.”

What a bounty of rich rewards from an ill-considered plea for help!  When each of these people wrote me they shared something personal and vulnerable, which has both moved and helped me.  I am enormously grateful.

In the past week I have recommitted myself to meditation and my studies in this area, ensuring that I spend some time each day connecting with this deeply soothing practice. I began a hydrotherapy program with a session in the pool with my physiotherapist. A strenuous but rewarding work-out that left me tired but not weak, reminding me of how good it can feel to exercise within my capabilities. Although, there was a somewhat embarrassing but funny-in-hindsight moment in the whirl pool, when after having me walk many laps going with the flow of the water, the physio had me stop and turn against the flow. My legs were instantly swept out from under me with the rest following post-haste, had he not caught me when he did, I would have been dumped most unceremoniously into the middle of the kiddies pool.

I am walking at least twice a week and encouraging Jason to join me when possible. Fridays are also now marked out in the diary for my Pilates gym rehab program and recovery time, as it is quite challenging for me just now.  As I have begun to accept that my recovery is going to go at a slower pace than I originally thought, my exercise routine has been developing right under my nose.

I now realise that I haven’t, as I feared, changed from being the hard driven ‘excel at rehab person’. It is those very traits that have been making me feel so bad, begging to be released to get to work with my body.  The pain medicines have been providing a buffer, slowing things down and giving me time to rest and recover.  I am so used to my own mental ‘whip-cracking’ to keep my life on track that its absence has terrified me, leaving me blowing in the wind so to speak.

This past week has seen a lot of thinking going on in this head of mine and I have realised that I have been making myself miserable.  The effects of the medications has certainly blunted my motivation and caused a great deal of lethargy but I have been looking at this recovery as an ‘all-or-nothing’ deal.  If I can’t exercise to the absolute limit of my capabilities, then clearly I am failing, right?  Wrong and I can see that now.

Brain surgery is a big deal and it turns out, I have needed (and still do) a great deal of rest to recovery from the operation, the general anesthetic, the hospital stay and all the other meds pumped into me.  I seem to be the only person not to know this going in to the op or coming out.   I do now however and I refuse to let myself judge my progress poorly any further.

Thank you for reading and supporting me throughout this major life event and your patience as I find my way back to full health.

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.

Am I Prepared For Death?

I woke this morning with this question in my mind. Those of you whom read my ramblings in the lead up to surgery know that I was very much preparing for such an eventuality. Yes, my legal and financial affairs were documented, agreed to and witnessed by the appropriate people. My decisions regarding what use some of my body parts could be put to, was also decided and agreed to by the relevant family members, to whom I am eternally grateful. Consensus or at least respectful understanding in such matters makes the process all the easier.

But am I prepared for death? As I pondered this question in the morning’s chill air, I opened an affirmation app on my phone. Anyone who knows me knows I have used positive affirmations as part of my coping strategy throughout my life. Interestingly (to me anyway), today’s affirmation read, “I am thankful for all the days of my life that I have lived so far, and for all the days I have yet to live. Life is so good.” By Louise Hay.

As my surgery date bore closer and closer, I made a point of thanking those closest to me, for their friendship and all they have done for me. In these somewhat awkward conversations, and whilst believing I would have a good outcome from surgery, I still felt the need to say goodbye.   Some calls were exceptionally difficult to end, as they felt all too final. In my attempts to acknowledge the genuine seriousness of what I was about to undergo, I had to also embrace the prospect of my death.

During this time, Jason and I became kinder and gentler with each other, as though the possibility of death somehow brought life into sharp focus and we wanted to ensure we were fully present with one another. We were more loving and appreciative of the other and took time to rest quietly in each other’s company; many hours were spent cuddling on the couch, some times in silence, others discussing all those difficult details.

Now, many weeks later, after all going well and recovery progressing, I find myself noticing how life’s little annoyances and frustrations intrude in the bubble of gentleness the prospect of surgery created around us. The occasional snappy response, the grumbles, the inattentiveness that we all experience, no matter how much we love and care about those closest to us.

How can we live our ordinary lives and still hold onto and cherish those we love, in every encounter, every moment together?

Thankfully, I think we are doing pretty well, as the seriousness of what we have just gone through together has affected us deeply, made us face what we could lose. Occasionally one or the other forgets and gets cranky but we are quick to apologise and move forward together.

Jason and I have a rule that gets deployed at times of enormous stress and that is simply to be kind to ourselves and each other. At these times, we focus upon being gentle with our words and supporting one another usually by focussing on how events are impacting the other rather than ourselves. We also lift the takeaway and junk food embargo to enable us to eat our feelings but for a limited time only. We don’t need to add obesity to the list of things to worry about!

As I ponder my preparedness for death, it makes me reflect upon my life and allows me to see the good, the lovely, the necessary and the wonderful.  A moment spent watching a parrot feeding in the garden, of feeling the sunshine upon my face, of inhaling the heady aroma of good Australian tea, of watching my husband prepare a meal for me, of gathering wild flowers, of laughing with friends, of reading a good book, of waking in the warm cocoon of a doona, of holding hands with someone I love, of walking unaided, of biscuits baking, the list goes on and on.

It might be clichéd but it is genuine, thinking about one’s own death shifts you into a different headspace where gratitude lives large, fear is diminished, and life takes on a brighter hue.

“Death is a part of life, as natural as the sun rising and setting each day; as natural as a flower blooming one day, and then withering the next.  Life is a terminal disease; we are all dying. It is our non-acceptance of that reality that causes the fear and suffering; acceptance brings peace, calmness. It also brings awareness of the need to live our lives in preparation for death.  This type of thinking is not morbid and unhealthy – it’s positive and healthy because it means we’ll be ready for death when it happens. And it means we’ll be happier now, while we are alive, because we’ll be living a good life – living ethically, avoiding negative deeds, doing positive deeds as much as possible.”

Ven. Sangye Khadro.  ‘Taking the mystery out of death and the after’.