Vulnerability and Connection

This thing, the human condition lets say, is a shared experience and opening up about my struggles often allows or encourages others to do the same.  In this way, I believe we help one another to carry the burden, to understand we are not alone in our travails and that there is hope for better days.

Exposing oneself is not an easy thing to do but my experience has shown that being vulnerable in difficult times, opening up about the things that frighten me, gives an opportunity for others to be kind, show unwavering support, surprise me with the depth of their love or friendship and to remind me there is grace to be had, there are safe places to reside when the pain becomes too strong and even, occasionally, laughter still to be shared.

I am astounded by the cocoon of wellbeing I have found myself woven tightly within by people far and near, those known for years (even decades for some) and those only recently met.

To be filled with gratitude at a time when I thought I’d be terrified is a marvellous thing.

Thank you.

Once more unto the breach, dear friends, once more.

I have gone over and over it in my head and simply cannot find a clever way of saying this or even a way to soften the blow (so to speak) but it turns out I need to have a second brain surgery.

Bugger (plus a string of expletives, if you are anything like me).

Bear with me whilst I explain how this has come to be.

In Jan 2015, I had my post-operative cerebral angiogram and my surgeon told me (over the phone) that a tiny (1mm) weak spot had pushed out near the clipped aneurysm and that whilst it wasn’t a concern, it would need to be monitored.  When I met with her next, I asked her to show me where the new weak spot was and like all surgeons she drew a simplistic representation of the artery, the clipped aneurysm and this new small bulge.  On the drawing, the new bulge was on the opposite side of the artery to the clipped aneurysm and she explained that treating the aneurysm altered the blood flow in that area and this can sometimes lead to other weak spots showing up.   Unexpected but okay; in effect this left me with two small aneurysm that still required annual review.

Having moved to Denver in the United States in August, I had to establish a new cadre of health professionals to manage my ongoing care and just before Christmas last, I saw a Neurosurgeon for my first review.  Before I could meet with him, I needed another brain scan.   Once at the appointment he informed me that my Australian surgeon missed part of the original aneurysm with the clip.  Frickin’ awesome says I.  The imaging shows it may be as much as half the original aneurysm.

Now you might be thinking how did my Australian surgeon miss seeing that on my post-operative scan.  The answer is that she didn’t.  We have since gained access to the report of this scan where it states that as much as half of the aneurysm remained unclipped.   She lied to me.  It’s that simple.  She lied knowing I was coming to the states, where they would see it and deal with it.

Every time I think I have worked through my anger about this, it seems to rise up again, out of the pit of my stomach, bitter and all consuming.

So there Jason and I are, sitting in the doctors office after all of four months in Denver, expecting to be told nothing more than “Everything’s fine, see you in 12 months” but no, the doctor starts talking about surgery to fix the original aneurysm and “whilst he’s in there” clip the other small one.  As he detailed the need to go in from the other side to the previous surgery, my mind was racing.  I recall looking at Jason with nothing less than shock on my face only to see similar signs upon his.

For those of you whom have never met my husband, this is a man whom upon watching a snake rise up out of the umbrella hole of our table one night on our honeymoon, slowly raised a single eyebrow in response!  For me to see shock on his face meant there was a serious disturbance in the force that day.

Thankfully all my experience with receiving unpleasant health news kicked in and I found myself able to begin asking questions.  I managed to explain to the doctor that I was nearly two years out from the first brain surgery and was still dealing with the consequence of that – double vision, head pain from the metal and seemingly unrelenting migraines.  Thankfully, he heard my concern and disbelief and stopped talking.  He gently felt my old surgical site and with a deftness of hand that I still find reassuring assessed the procedure I had undergone, explained why poorly placed metal screws and brackets were likely causing me problems and then explained how he doesn’t use that procedure any more, having developed his own, less physically traumatic approach.  His procedure requires a smaller skull hole, substantially less cutting of the jaw muscle (which means less of my face peeled away from my skull and reattached) and fewer metal brackets externally.  He also volunteered to remove as much of the metal in my head from the last operation as he can.  At a follow up consult, both the surgeon and his resident felt my head looking for these brackets and were surprised that all of them were so exposed, as apparently, here, they bury the metal as deeply as they can under muscle so it can’t be felt from the surface.  All of the metal in my skull can be felt easily and it continues to be tender to the touch two years out.  Grrrr.

Whilst all his talk of a better surgical technique was nice, Jason and I still left the appointment largely in shock.  Neither of us was expecting to hear that I needed more surgery, let alone due to my previous surgeon’s incompetence!

If I’m honest after a couple of days pondered his suggestion, I found myself shelving it, in what I now recognise as denial.  I simply could not face even the thought of going through the surgery again.  I have had such a difficult recovery, experienced so much pain, and had been ignored by my Australian surgeon who refused point blank to see any connection between the surgery and my ongoing issues.  As much as I try to stay upbeat, managing things as they come, I have suffered greatly these past two years and honestly, could not find it within myself to do it again.  My resilience reserves are frankly depleted.

After some blissful self-imposed ignorance, I decided I needed a second opinion, and met with another Neurosurgeon, one specialising in vascular aneurysm treatment (non-surgical) but can do clipping as well.  After a detailed discussion of the options, including not doing anything right now, he agreed with the first doctor that surgery was the best treatment option and it was warranted sooner rather than later.   Due to me still being young (ish), they know over time the aneurysm will continue to grow and waiting just invites the opportunity for a brain bleed to occur.  We were very somber walking out of this appointment.

It was at this point that I collapsed in upon myself emotionally.  Jason seeing my misery, wisely reached out to the counselors provided via his employer and I grudgingly met with one of their Psychologist. I won’t detail everything we went through but suffice to say, she validated my experience and my grief and basically gave me permission to stay in my sadness and anger for a while in order to process it.  The thing about being the type of person, who pushes through difficulty and ‘bounces back’ from calamity, is you begin to expect an awful lot of yourself.  I took the time I needed to begin to come to terms with my fate.  It wasn’t easy and I am so grateful to Jason for being so gently with and kind to me during this time.  He gave me a safe place to be in the midst of my suffering.

After a while, I realised that in order to commit to surgery I needed more information.  I had to reassure myself that I would not have such a horrendous time.  My mind was full of all the poorly managed aspects of my post operative care last time; such as insufficient pain relief, being left vomiting for three days due to the pain, severe swelling and double vision, to name a few things.

We met with the first surgeon and a Resident, to go over everything and run a few (dozen) questions past him and eventually, grudgingly, agreed to schedule the surgery.  I go into hospital next month on Thursday July 21st.  Jason said my questioning of the surgeon was as though I was interviewing him for a job, and I guess I was.

On a couple of occasions, I had to provide context for my question as they looked at me as though I had sprouted a second head.  An example may be useful: With brain surgery it’s critical that they keep the patient’s blood pressure spot on, meaning there is enough blood circulating to keep the brain alive but its the minimum amount of blood flow they can achieve so that should there be a bleed during surgery, there is less blood flowing.  To monitor the BP this closely, they use arterial BP measuring which requires two very large needles to be inserted into the underside of the forearm into arteries.  It is a nasty procedure that results in some of the worst bruising I’ve ever had.   Just prior to going to theatre the anesthetist told me, he would put those needles in once I was unconscious.  That is standard practice.  Unfortunately, he was also a lying sack of s@i% and as soon as I was in position on the operating table, he grabbed my arm, slapped it vigorously and put the arterial needles in whilst I was wide-awake, no pre-op sedation, nothing, wide-awake.  It was excruciating and the pain was the last thing I experienced as they anesthetised me.  This may be why the brutality of that moment has stayed with me.

Back to the US, and I share this anecdote with my new doctor and as he and his resident exchanged glances, my surgeon reassured me that I would not be awake for that.  When we finally left him in peace, Jason commented that he thought they must think that medical care in Australia is barbaric.  Sadly, sometimes it is.

I’m happy to say that now for the most part I have moved through my sadness and fear.  We both still have moments where it all feels a bit too much but we have each other and now that we are reaching out and telling people, lots of moral support.  Being on the other side of the world away from everyone we know is adding its own stress.  That said our new friends here and work colleagues of Jason’s have already begun making sincere offers of assistance and his work’s admin team have been super helpful and are doing everything they can to support us.  One friend has set up a Meal Train web pigeon our behalf so people can volunteer to bring us a meal on a given day, which is reassuring in that I know I will get to see a vegetable occasionally in the first few weeks at home.  Also, my mum will be coming over shortly after the operation, once I’m home and need someone to help out.

Despite my reluctance to go through another craniotomy, I am very impressed with the surgeon here.  He is highly experienced and as mentioned earlier, has developed a less physically traumatic approach to the surgery.   He was very approachable and understanding of my concerns and from what we hear, is one of the best Neurosurgeons in the State, the guy other surgeons’ send their tricky cases to for care.  This very experienced doctor sat in front of me, for half an hour patiently answering every question I threw at him.  We are very optimistic of having a better outcome and easier recovery than last time.

 

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.

 

Vaguely Human

I’ve been reflecting on how much better I have felt these past couple of weeks. I haven’t woken with a headache in a while and although I am still on slow release morphine morning and night, I can now go three hours each morning before needing any acute pain relief.  My use of Endone (more morphine) has all but ceased, leading to a clearing of my mind and lifting of paralysing lethargy.  I am beginning to feel much more like me again and perhaps even vaguely human!

Thanks to having more energy I can contribute around the house in a more meaningful way.  Jobs like un-stacking the dishwasher are now possible, as the intensity of the pain in my head when bending down has lessened greatly.

There are still mornings when I wake with swelling around my right eye but it generally resolves as I move about throughout the day.  The pesky double vision visits me most frequently at night when I am tired; and while my daytime vision is good, there are still limits on how long I can read or write, although it has increased much farther than the 10-minute mark of early days.  Jason knows it is past time for me to be in bed when he notices I am holding one eye closed while watching T.V.  It’s a ‘tell’ I hope to lose soon, although it does serve as a definitive signal of fatigue.

Driving has been restored to me with the okay from my doctor. I am sure you can understand if I take a moment to shout ‘Independence is mine’.  The timing was helpful as the financial pressure from me not bringing home any pay for five and half months was making taxis a luxury we could no longer support.  My first few outings, I was acutely aware of how long it had been since I drove and took it slow and very easy.  I can say happily that driving has become more natural again but as a precaution, I still take my time checking for traffic and ensuring my decisions are not rushed. Whenever I head out, I am thankful to live in a small town with small town traffic.

My head is clearing relative to the slow but steady reduction of pain meds and my doctor thinks I could be off everything by the end of the year.  Over coffee recently with a former boss, now friend, I was asked what am I working towards in the next few months and after a short pause I told her that, “I would very much like to enjoy a glass of champagne on Christmas Day (having not drunk alcohol since April) and another on New Years Eve so I can fondly say farewell to 2014”, a year that will now always be the year I had brain surgery. What’s that saying? What doesn’t kill you makes you stronger.  I think I must have that tattooed on my arse or somewhere else I can’t see, you know, like a birthmark.

I am noticing other improvements as the weeks slide by and am thankful that my hair has stopped falling out and breaking at the slightest touch. With hair long enough to get caught in my armpits (why did no one warn me when I said I’m growing my hair?).  Anyway, with long hair that continually shed, a house with all tile floors, it’s safe to say we’ve had Veraina tumble weeds rolling about the place. Thankfully it appears to have slowed.  I recall how freaked out I was when my hair was first washed after surgery (by a lovely nurse who regaled me with stories of the annual spiritual (and boozing) retreats she organises).  As she began rinsing my head a couple of clots of blood and hair came off from the points where they drill into your scalp to hold the head still during surgery. Ewww!! Even more came away when we combed it. I lost tons of hair in the first few months, thankfully not enough to be noticeable to others.  It was a result of the stress upon my body, the anaesthetic and other drugs etc.  My appointment with the hairdresser sadly had to be cancelled as my scalp and scar were still too tender but I think next month’s the charm. This is the longest break I think I’ve had from getting my hair coloured. It has proven a trifling entertainment to rediscover my natural colour.  It’s a little sparklier under bright lights than I remember.

So, as the improvements roll on through, I have enjoyed my first few days with pain-free hours, no icepack on the head for break through pain, no waking in the middle of the night because I’ve been resting on my scar for too long and no ice pick stabbing pains in my skull.  Yes, I still need to medicate when the headache seeps back in, to prevent it from becoming a migraine, but the intensity is nowhere near what it was.  I do still occasionally get the electric-spider-dance pain across my forehead but I have found rubbing the skin furiously works well in dealing with that. And thankfully, the whole ingrown hair torment seems resolved, although I have leant the important lesson of getting a promise from Jason before he ‘looks’ at my scar, that there will be no squeezing without explicit consent.

Speaking of scars, mine has healed remarkably well and with the hair growing back, it cannot be seen without close inspection. I had thought it would be visible should I have short hair again, but it wont.  My surgeon did an incredible job keeping the entire scar within my hairline.

In feeling more human I have had a tentative peek at a full recovery.  I can for the first time, see the end in sight.  Five months isn’t really a lot of time but being in pain and a drug fog, stumbling about trying to rehabilitate, it has at times certainly felt like a long time.

I read a passage today that spoke to me about dealing with adversity.

“Even the worse things can exude some lightness: Yes, this is terrible, this is not what I wanted, not what I’d hoped for, not what I’d worked for, maybe even what I feared. But also it’s not that bad. It is like a dream. It’s happening and not happening. Soon it will be in the past. So I can look at it differently, I don’t need to validate all these dire thoughts that only make matters worse. Maybe I don’t need to be so worked up about it. Maybe I can just figure out how to deal with it without that extra measure of anxiety and freak-out.” Training in Compassion by Norman Fischer

I certainly indulged in a fair bit of freak out in the beginning of this journey but in the end, despite brain surgery being the scariest thing I have faced, I turned up and did what I had to in order to keep living.  I worked hard at rehab, have struggled with the side effects of medicines but have, with lots of love and support begun to find my way out, my way out of the dream. The surgery is in the past as is most of the pain associated with it.  I can now turn and face the future while residing in the present; there is after all, still work to be done today, so I may reach my best ever recovery and future.

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.

 

Contentment

Sitting reading, my attention is drawn away by the distinctive cry of a warbler bird, nested in the trees at the base of the MacDonnell ranges, I am aware of a great sense of contentment.  I awoke without the blare of an alarm and could make a pot of coffee and breakfast at leisure.  I have had time and opportunity to meditate, reflect and do some gently stretching exercise.  My time is my own and as long as I heed the signals of my head and body, taking the right pill at the right time, resting and applying ice as necessary, I have begun to have days of little debilitating pain.  Delightful days where my thoughts are clearer, my ability to cook and more importantly to bake is restored and I can see clearly the progress I have made on my pathway to recovery.

I no longer count the weeks since my surgery, always a sign that the emotional trauma is being released and healed.  I still have many limitations but sitting at my kitchen counter near the open back door, feeling the cool morning breeze dance around me, I am happy and am feeling, not lucky but perhaps, fortunate.  I have survived the worst of this experience and will continue to heal, become pain-free and have my function restored in those parts where it is missing.  I know this because I have done most of it before and because I have people who love me and continue to hold me up as I put myself back tougher again.  My contentment this day comes in part from the knowledge of that love and support.  My husband is a marvel and I truly do not know how I would weather the storms of life without him.  He understands me even when I do not, he holds my hand and passes tissues at those moments where tears are the only way left for me to express how I feel and he gets up early to the blaring of an alarm and despite his own tiredness and concerns, goes to work every day to earn the money that pays for me to be able to sleep, meditate, exercise and take the time I need to recover.

Love Quote

And The Eyes Have It

In all my healing and muddling through I have neglected to provide an update on my vision and associated things. A little while back I had a review with the Ophthalmologist at the Alice Springs Hospital eye clinic, to follow up on my nerve palsy, caused by post-operative swelling compressing the nerves of my eye, causing severe double vision. My friend E an Optometrist, offered to come along for morale support. Thinking it would be wonderful to have someone I could pepper with questions, should I be left with any, I welcomed E’s company. On the day, I was pleased to see my friend was there ahead of me, chatting amicably with the staff. In a place remote as Alice, my friend not only works for a private business but also with the hospital staff undertaking very remote travel to provide eye care in Aboriginal communities and also spends time working at the in-town Aboriginal health service. She is extremely busy and dedicated and it is this that makes me truly appreciative of her taking time out to accompany me with my relatively straightforward eye condition.

For more on eye health in Central Australian Aboriginal communities, these links may be of interest. http://www.hollows.org.au/our-work/what-we-do/improving-indigenous-health & http://www.hollows.org.au/news-media/town-alice

E introduced me to a colleague, Ms. M, who was visiting from Tennant Creek, the next largest town, 500 kilometers heading north, with a population of around 3,000 people. She was down to observe the Alice team at work for the day. I am not sure who would be seeing me but I have heard a great deal about Dr. Tim Henderson and the great work he does and doubted my condition would warrant his attention. After a short wait a dark haired young man walked into the waiting area, looked at the file in his hand, “Ahh, um, Ver-riana.” “Veraina,” I corrected gently as I stood.

I followed as he led us to a consulting room, with a couple of old chairs, a small desk and piles of boxes and equipment. I made my way to the seat next to the desk as E slipped in behind me, taking the chair by the door.   I told the doctor she was there for morale support (not realising he was a visiting student doctor and had no idea who she was).

He introduced himself and explained he would be examining me and doing all the tests before the Ophthalmologist would see me and asked me to please tell him the circumstances leading to my visit. As I began, I recalled a conversation E and I had a couple of weeks before my operation about patients wasting valuable time with trivialities. We were cooking breakfast whilst camping at Boggy Hole and somehow we got talking about what information is important to provide and her frustration with clients whom when asked the polite question, “how are you today?” go on to spend most of their appointment time actually answering the question, usually talking about anything other than the reason they are at the Optometrist. I recall telling her that after all my practice attending medical appointments, I thought I had become quite good at answering questions appropriately and providing relevant information.

I recounted the pertinent events to the student doctor relating to my eye issue, as concisely as possible. When I finished, I glanced nervously at E. She nods her head encouragingly and says, “You did good.” Thank goodness, I think and relax a little, as we shared a quiet chuckle.

The doctor proceeded to write notes and begin what became two hours worth of tests. After the first 45 minutes, E had to return to work.  Prior to leaving however, looking ever so casual, E asked the doctor his opinion of which nerves were involved in my case.  The young doctor pushed his chair away from the desk and faced her as he “ummed” and “ahhed”.  He eventually began a halting recital of his text books and whilst being put completely on the spot managed to provide an answer that E accepted as reasonable.  “Do you have an interest in eye health?”, her victim asked. “You could say that,” says my friend in an manner one might expect from the cat in and cat and mouse scenario.

Ms. M from Tennant seemed to adopt me after E left and asked if she could follow me through the testing as I was undergoing a rigorous process that enabled her to see a lot of what the team do. At one stage I had to have drops put in my eyes and wait as they did their thing, so we both took a seat in the waiting room and passed the time with talk of the woes of the health sector in Tennant and Alice, the decline of funding and then the joys of hospital stays. It was actually a really pleasant way to spend the time. When the nurse came out to give me the drops, she handed me a tissue and tilted my head back, “Now there are two different sets of drops so just stay like this while I do them.” I complied but when the second lot of drops hit my eyeball, they set off a searing pain. I bucked against the pressure of her hand on my head and stamped my foot in an effort not to punch her. As both the pain and I settled, my new friend was heard to murmur, “That’ll be the nerve ones.” Gee, thanks mate. You could have warned me!

After several tests the student doctor spoke with the Ophthalmologist, who seemingly disbelieving of what he was told, came into the room and repeated a number of tests and measurements. When, after two hours of every eye test known to woman, he finally met with me for the verdict, he explained they wanted to have a solid benchmark for my vision in the event of me having any issues down the track (particularly as I have brain aneurysms). Further, he told me I had regained the peripheral vision lost after surgery and my vision in the right eye was excellent. The only remaining obvious sign of the nerve palsy was in my eyelid, which was still drooping. He believed this would also resolve with time as would the weakness of the eye and the double vision I have with distance vision and when tired. The pain I have upon tearing up is nerve pain and it will hopefully also go away. He then said, “It is the fastest ever recovery from nerve palsy I have ever seen.”

Fastest ever, oh yeah, that’s right. Fastest. Ever. Recovery.

So much for: “Leave the patch on for six months and we’ll see how it’s going”.

Small Milestones Pave The Trail To Recovery

I did it!

I’ve had a recovery breakthrough.

This week I did two pool and one gym rehabilitation sessions.  I have been working up to this for weeks.  It has been a month since my physio set up my pool exercise program and every week since I have been working hard to be well and strong enough to do it twice per week in addition to my Friday gym session.  I finally cracked it.  I have no idea if I’ll be able to do it all again next week but I’ll be sure to give it a go.

Now, if you’ll excuse me – I need to collapse onto my couch…

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.