Treatment Affectionally Named ZAP-ZAP

I have been having Electroconvulsive Therapy (ECT) since late December last year to treat severe depression with suicidal ideation and not talking about it widely.   I have tried to put on a brave face and tell some of my closest friends and those we see regularly but have not broadcast the fact beyond that and I suddenly realise that is due to shame.

Yesterday I was reading Brené Brown’s ‘Daring Greatly’ when I read a chapter on shame, a compelling exploration of the topic and one that has enabled me to see my shame at my perceived health failings and need for seemingly extreme medical treatment.

As I have digested Brown’s research and conclusions, I find myself agreeing with her, shame is harmful to us and open, honest dialogue about shame itself and whatever we think is shameful is the best path forward for healing.

Those of you who know me, know I work as a health promotion professional and Lord help me, my last role was managing a suicide prevention team within a Mental Health Service.  Our job was to promote open discussion around mental health issues & good mental health practices, work to prevent suicides within the community and support the community when sadly, they did occur.  Depression and mental illness are not unknown to me.

I have personally experienced bouts of depression, usually following a serious health crisis, life alteration and restriction.  Not unreasonable you might say.  Fortunately, these bouts have all resolved thanks to psychotherapy and medication.  I have always been compliant in the application of these interventions and prided myself on doing the necessary ‘work’ to overcome the depression.  I wholeheartedly do not enjoy the smallness of the world when I am afflicted with depression.

This time the depression beat me, but it had an unfair advantage in the form of a medication whose worst known potential side effect is severe depression and suicidal thoughts.

Following brain surgery (to clip aneurysms) in 2016 I began experiencing strange episodes of lost speech and drowsiness.  They were seizures caused by a tiny bit of damage in one of my speech centres and did settle down a lot but not completely.   Working with my Seizure Neurologist I was using an ‘as needs’ medication whenever I felt a seizure coming on.

When we discovered I needed surgery on my spinal cord nerves, I spoke with the Neurologist about taking a preventative seizure medication so as to support my recovery not add to it.  She agreed and prescribed Keppra, a common anti-seizure medication.

It worked fine for preventing seizures but unfortunately had some nasty side effects on my mental health.  As my mental health declined, I consulted a Psychologist, then at her insistence, a Psychiatrist and took the medications he prescribed, whilst continuing with therapy.  When I began getting teary for no reason and having vivid visions of inflicting serious, if not deadly harm upon myself with kitchen knives, Jason insisted I go to the doctor and he came with me.  Once the doctor understood I was experiencing frightening, vivid, suicidal hallucinations, he was quickly on the phone to my Psychiatrist whom recommended putting me in hospital to keep me safe.

Not understanding what was awaiting me, we complied with the doctor’s request.  I’ll stop there for now on the back story of the depression as the experience of being admitted to the ‘Psych’ Ward is a whole other story!

I wanted today to admit to having ECT, to having severe depression and suicidal ideation as I believe we need to be as honest as we can about mental health issues and not drown in shame about them.

However, just writing about it makes me sad because I feel bad about dragging Jason through all this.  It’s been a really long, hard year for us and I can’t help feeling guilty about that.  Perhaps if I’d worked harder in therapy or recognised the warning signs sooner, been stronger, not needed the damn seizure medication or, hell not needed surgery, who knows…

Jason has been simply amazing through all of this and to be honest, I’m still alive because of him.  I just wish I hadn’t had to be reduced to such a low where nothing gave me pleasure, and life didn’t interest me.  I wish I didn’t feel shame at having to need such a seemingly radical medical treatment as ECT; a treatment that renders me near non-functional for days and days.  Leaves me making mistakes daily and wandering around in a near-permanent state of confusion.

An effective treatment that is lifting me out of the dark, restoring my spirit, allowing me to see clearly again so that whilst I can still feel my shame, guilt and sadness at all that has occurred, I also am starting to understand that I’m not to blame, neither is anyone suffering with depression; and it is suffering.  I recently said to my ECT doctor, “I don’t know where I’ve been”, referring to the past six months of my life; too which she replied, “Suffering is where, suffering”.

So, should you find yourself in distress or a perpetual state of sadness, please, please reach out to someone and get help.  I didn’t have the sense to recognise the danger I was in so had I not told my husband about the dangerous hallucinations and thoughts, I could have come to serious harm.  Mental illness can feel as though it still has a stigma attached to it, but you’d be surprised at how supportive and kind people can be and the health professionals working in this area are generally very caring.

As I improve, I realise I do not want to carry a bag full of negative emotions about the experience forward with me, thus I tell you all today where I’ve been recently and what I’ve had to do to get through it.  Thank you for taking the time to read this.

I think I can

Have you ever had to start an exercise regime or return to one after a break and found yourself lacking the motivation or inclination to do it? I had a horrible head cold last week and it had me on the couch for a good number of days and feeling sick for a good number more afterwards. In the lead up to this winter bug, I had been exercising nearly every day and was feeling great for it but then I got sick and the momentum broke.

Even after all my years of working at physical recoveries and developing a will to exercise, I still find myself each morning this past week wondering if today will be the day I get back into it – but I haven’t, despite the guilt inspiring self-talk and you know what, that’s normal.

Us humans are such creatures of habit yet we are also highly adaptable, we wouldn’t exist as a species if we were not but some habits (usually the healthiest ones) are harder to get back on track than others after a disruption of our routine.

Despite knowing all the benefits of returning to exercising, I have simply not been ready and thankfully after years of practice, I no longer have a melt-down thinking it’s the end of the world because I’m obviously NEVER going to exercise again because I’m too weak-willed. I am what I like to call a recovering perfectionist and life used to be quite black and white to my mind. I was, as my husband liked to say, an “all or nothing kinda girl”.

So if you also find yourself being internally berated, please try to breathe and take stock. You can do it; it just might take having a plan of attack rather than simply hoping you wake up one day with your exercise-will restored (or newly created).

As I have thought about my current break from exercise, I have tuned in to hear what my body has to say and initially, I was too tired after illness to jump straight back in and now after a longer break I am beginning to experience an increase in physical pain and discomfort. In the past, I let this pain grow to the point where I am spending so much time thinking about it and treating it, that I realise I need to start exercising again so it all settles back down and isn’t a huge part of everyday.

In more recent times, I have learnt to anticipate this ridiculous dance and come at it differently. If you find that you are bemoaning the fact that you haven’t exercised (even just internally) try to catch yourself at that moment and ask yourself, “What can I do now for the next 5 minutes that will count as exercise?” That may not sound like much but if it gets you up off the bench (or couch as it may be), that’s a good thing.

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The last couple of days I began with stretching and although it didn’t take long I felt better in my body and it shut down the nagging negative voice in my head, allowing me to feel pleased that I had at last done something. Yesterday as I was feeling more energetic, I added in one set each of my lower limb rehab exercises. Today I actually got myself to the basement (my exercise space) and did a series of stretching and strengthening exercises. So now when I think about this week I can honestly say I have started back and know I will continue to build back up to my pre-illness levels of exercise.

Obviously for fitter people you can start with a longer exercise interval to get you started but for anyone recovering from illness or injury, you start where you can, be it seated arm and leg exercises, walking laps of your home, stretching, mobilising your joints, climbing the stairs a couple of extra times, or enjoy a stroll in the fresh air. Any movement is better than none. Taken a day and then a week at a time, with realistic incremental increases, you will find yourself developing an exercise routine that suits you, a routine you can be proud of.

Why Write

The idea of writing a blog came to me after I was told I needed brain surgery to clip a growing aneurysm before it could cause me serious harm.  I was scared out of my wits and as I rang my family and friends to break the news, I realised I needed an easier way of keeping everyone up-to-date with how I was doing.  A blog seemed the natural outlet.  What began as a means to keep in touch with people I knew, slowly showed me I had powerful experiences to share, experiences that could be helpful to others.

Having endured and survived a stroke, two brain surgeries and two spinal injuries, I write now to share what I have experienced and learned as a means of helping myself put it all in context and in the sincere hopes it will assist others going through challenging times.
When I go to see a new doctor who has read my file, they always look surprised when they meet me. They expect to see someone with a walking aid, a serious limp or simply someone broken by circumstance. That’s not me.
I have worked hard to recover, done all the rehab I could in order to be able to live my best possible life – and it is this outcome that I want for anyone who has suffered a serious injury or illness.
All too often the medical profession gives up too soon, or insurance doesn’t cover all the treatment we need or our well-meaning loved ones coax us to go easy. So many of us quit too soon and live with limitations we might overcome if things were different.
I’m here as living proof that by taking control of your own life and your recovery, you can set your own meaningful goals, find personalised ways to rehabilitate and recover, so you too can make your best possible recovery, leading to your best possible life. After all, who knows your heart’s desires better than you.
So if you are in need of some company on your journey or know someone who would benefit from knowing they are not alone, follow my journey or share my blog, because together we are stronger and healthier.

Out The Other Side

Firstly let me start with the reassurance that I am alive and well after my brain surgery. I am very conscious that it is now past the eight week mark and I am yet to write anything about it. I have been pondering how easy it was to write after the first operation compared to this time and it seems the main difference is pain management. I was in loads of pain last time and as many of you will understand, pain can serve well as a writer’s motivation. In all seriousness, the surgery went very well but I have been so high on pain medications that most tasks of ordinary life have been beyond me. I also find myself living with profound tiredness, leaving my day’s routine to mostly sleeping, couch rest and general zombie-like house wandering. Living the dream!

Fortunately, I have in the past week or so been able to reduce the number of lovely drugs needed to tame the pain so am beginning to have a few lucid moments. Now being one of them.

So a quick update; the surgeon was very pleased with how his work went; he was able to clip the original aneurysm and the second small one from the left hand side of my skull. img_4894He also reopened the incision from the previous surgery (right side), cleaned it up a bit, removed the hardware (metal brackets and screws) left to secure the skull flap whilst it healed and filled in a depression (possibly caused by muscle atrophy since the surgery) with bone cement.

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I had asked if he could do a facelift whilst he was at it, but alas, no. By removing the metal, we are hoping for a reduction in migraines, as it is the medical opinion here that they were likely a trigger. Unlike my doctor in Australia whose sage words were, “The migraines might just be the new you after surgery”. End of advice!

I can report several improvements already in this area, with the constant jaw pain I have had since the first surgery vanishing. Additionally, the tender spots where the metal was are no longer sore. Whilst I am still experiencing localised pain at the incision, I am hopeful that as it heals, there will be further improvement.

 

Now immediately after this op, I was apparently very ill upon waking and as my beloved and devoted husband tells me, “You were puking for hours”.   Thankfully I was so out of it I have absolutely no memory of this or of being in any pain for my entire six-day hospital stay. There are plenty of other things I also don’t remember but I’ll save that for later.

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I had a slightly longer than expected stay in hospital, largely due to having several strange episodes which were initially suspected strokes. They were not, happily, thankfully, get down on my knees and thank all deities, not. During these episodes my speech became garbled or I ceased being able to get my words out, then as speech returned, it was painfully slow and I had difficulty forming words. This is called aphasia and apraxia. I experienced something similar after my stroke in 2007 but not with the same intensity.

The first two times I had an episode, the staff called a Stroke Code, which involved a team of health professionals rushing to my room, asking loads of questions, whilst taking blood, physically examining me, ordering tests and rushing me to Imaging. You may think that sounds awful, perhaps even a little frightening, and yes, had I not been stoned out of my head on pain medications, it might have been. In less than 30 minutes, I was assessed, put through the CAT scan and returned to my room, I also had an MRI. This hospital takes the possibility of stroke seriously, as I wish all hospitals would.

img_4817The initial diagnoses was that swelling near the speech centre of my brain was causing seizures, so I was then connected to an EEG machine overnight to see if they could ‘capture’ evidence of one. I did have an episode whilst hooked up but the EEG didn’t capture anything. This meant it was either migraine related or the seizure activity was too deep within my brain for the EEG to detect; (I know, I know, my head’s too dense for the machine to penetrate). As a precaution I am on anti-seizure medications for a few months. As for the other possible explanation of migraine – the surgery may have set off a new type of migraine symptom for me. I have continued to have a couple of episodes a week since coming home but we are hopeful it will resolve itself as I heal and my brain stops having a tantrum at being interfered with. I see my Neurologist this week when I am sure this will be discussed.

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Jason has been super busy looking after me, managing my medications routine and generally keeping me on track. My mum has come over from Australia to help out and allow Jason to return to work. We were kept well fed by our community here using the Meal-Train website, which worked perfectly for our needs. My incisions are healing well, my pain is slowly lessening and I am beginning to do more. Both the surgery and recovery this time are 100 times better than my previous experience.

All in all, I received excellent care from the team at University of Colorado Hospital and much love and support from our families and friends.  I am extremely thankful.

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.

 

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…