A little part of me in the big, wide world:
One part of my journey through recent illness has been – so far, at least – ignored. I have avoided dwelling upon it, and yet the issue has been in my consciousness ever since my return home from the second surgery. Since then, I have written much about my experiences. And therein lies the matter; the effect upon my desire to write. In truth, even that is not quite accurate; the issue at hand has been my need to write about the events of the last ten months. I’ve tried to avoid the subject, largely because I have an instinctive dislike of the hyperbolic ‘struggling artist’ who ‘needs to write as much as I need to breathe’; an animal which inhabits – or infests – the internet these days. I don’t go in for artistic angst, creative struggles or existential crises in the name of my hobby. But suddenly, I needed to write.
I still do.
I suppose I shouldn’t be surprised. My writing began from a desire to document my past for the benefit of my children; a desire almost strong enough to be a need. It drove me through the process to commit to my pages more than one hundred thousand words. It pushed me through the tedium of editing, rewriting (more than once) and finally to the biggest risk of all: publication. As it would turn out, the risk was a financial failure, and I have sold few volumes of my work, but my enjoyment of the creative process has kept me coming back for more (one finished book still being edited) and more (another three-quarters completed).
Recently, I’ve been writing about the recent past for different reasons. I experienced my illness - and the treatments for it - as traumas, and I’ve needed to deal with the emotional fallout of new and at times disturbing experiences. My writing has been integral to processing my feelings, understanding my responses to recent events, and finding ways to move forwards and into my future. Writing has proven to be genuinely therapeutic, and as a result, has a new place in my world. Writing has evolved from a straightforward hobby into a new thing; something more, something bigger. It feels, for the first time, like a friend.
I owe writing a debt, now. It has helped me, and continues to do so as life moves away from dark times and towards light. I feel an obligation to pay more attention towards it, although I remain pessimistic about my pursuit of accomplishment ever amounting to something tangible or – dare I say it – lucrative. My intention is to do it because I enjoy it, nothing more or less. Any recognition or success would (I cannot say ‘will’ without snorting internally) be entirely incidental – or perhaps I mean accidental. The pressure to succeed is no greater than it has ever been, but the motivation to write has subtly changed. I now write because I can, because I want to and – if I can say this without drowning in conceit – because I’ve improved, and I know that at least some people enjoy how I do it.
One day I may or may not look back upon this period as critical, but right now I recognize that it is at least of some significance. I’m happy to ride that wave of…whatever it is. I wonder to what kind of shore it may take me?
An idea I am allowing to ferment:
'With gentle movement, the floor groaned like a cranky old man rising from a deep chair. The weight of the sodden walls bore down heavily upon the old beams and boards, but the floor no longer cared. The house, in fact, no longer cared about anything. Old beyond reason and forgotten by too many minds, the house had grown bitter and angry. It had become a being long ago, the death of its last occupant somehow bridging the void between nature and legend, myth and magic; nature, and the malevolence of the earth before mankind. The house no longer cared about anything or anyone except its self. Self – and its perpetuity – had become an obsession. Impossible though it seemed, the house lived.'
My latest attempt to write an article with a 500 word limit...
What Moves Us
“Move pen, move - write me a mountain.”
A sentence among hundreds in a TV documentary some time ago about a famous performance ‘slam’ poet. I have, for as long as I can remember - and without knowing why - felt that poetry was an overblown, pretentious art form with little relevance to my life. Nevertheless I was intrigued by this programme and resolved to watch it through.
I spent much of the ensuing ninety minutes watching the screen with tears streaming down my face. This man has a unique gift with words. Not just the words that he chooses, but the ways in which he strings them together, weaves them and throws them at his audience like a warm water bomb. His audience became saturated with his word craft, swept along upon a tsunami of emotional exploration and realisation. His words overwhelmed me. Quietly, I admitted to myself that I envied him for his talent and his drive. Even as I was enraptured by his gift, I wished that it was mine.
I also write, although he and I inhabit different spheres of ability and achievement. Perhaps that’s how it should be. We have, after all, lived different lives and experienced the world in very different ways. Two things we share, however; we write about ourselves and we are moved by our relationship with our respective fathers.
I began – tentatively – to write about five years ago. My father had died, and I travelled to England for his funeral. Standing in a church for the first time in many years and – to honour his memory - speaking the words that I no longer believed, I realised that my father was gone. He was gone, and I had no idea who he really was. All I knew was the ‘Dad’ persona; the side of himself that he had made available to me and my own children. ‘Tommy’, however, was a stranger.
I’m not bitter. He was a quiet, self-effacing kind of man. Talking about himself did not come easily to him, but reading between the sparse lines of his story, I know that he led an interesting life, and was a good man who left behind many friendships.
Twelve months later, the truth slapped me in the face. Finally it dawned upon me that I must not leave my children wondering the same things about me. Somehow, my story (hopefully nowhere near its final pages) needed to be told. The resulting memoir – all five hundred pages of it – took almost three years to write, re-write, re-write again, walk away from and finally return to. It took more nerve than I had guessed to publish it, but finally doing so became an emotional triumph.
My father taught me many things - not least: how to wound oneself performing any banal household task – but his greatest teaching was unintentional. His biggest lesson was to never leave unsaid that which can bring joy to others.
My words are my gift to my children.
I've been asked by a number of people to explain why I would want to move to a secluded island. My responses never seem to do justice to my new environment, so I would like to share a few of my own photographs of our surroundings in the hope that they will adequately convey why I love living here. If you still don't get it, then frankly you're a little weird. Or maybe it's me...
“This wasn’t part of the plan, was it?” my old friend in France messaged. My heart skipped a beat (and not just because of my autonomic neuropathy, for a change) as I thought about what he was going through. A mere three months after his wife of twelve years had died from a reoccurrence of her breast cancer, he remains bereft. Other issues (you know the kind; family disputes that strike at the very foundation of our world view) have crippled him before, during and since her passing, and the poor guy, whose heart is 24 carat gold or else I’m no judge at all, has been left reeling by the cruelty of people he once thought loved him.
By comparison, I’m having a cake walk.
Mmmmmmm. Cake...oops, sorry.
I know what he means, though. All he wanted was to enjoy the semi-retired life with his lady love, and to be left in peace to do so. All I want is to be healthy and to live a long life (largely because it means I get to enjoy the company of my loved ones for as long as I can), but right now my body seems to have other ideas. I’ve been in hospital again, for more surgery.
Several weeks after a man wearing scrubs (well actually, more than one; it was a two-team effort) inserted things up my hooter and messed about with the inside of my cranium and then plugged the hole with tissue taken from my left hip, I had an MRI to plan for some radiotherapy. That was a Saturday. A week later I was back in Vancouver General Hospital for ‘emergency’ surgery to remove some tumour tissue that had re-grown from the original operation site. I had suspected that something was amiss when the sight in one eye had again begun to deteriorate, but this was still a shock.
An even bigger shock was the extent of the ‘damage’ this time around, since the first surgery had been, to all intents and purposes, invisible. I am attaching a photo below…feel free to use it to keep the kids away from the ‘fridge.
Oddly enough, this surgery has been much more straightforward to come to terms with – certainly in terms of physical recovery. That ugly scar is healing well, I have been up on my back legs and out in the community – albeit gently – from a week after they took the top off my skull, and so far there are no signs of another resurgence. My fingers, toes, legs and eyes are firmly crossed that the path back to some kind of normality may be a swift and simple one.
I have even picked up my writing cudgels once more. I’m contributing to our local (very local) newspaper with short articles, I’ve sent an unpublished book to a friend, I’ve written a brief eulogy for her husband who died in the same week that I was re-admitted to hospital, and I have started to finally proof-read and edit an old piece of work with a view to self-publishing it later this year. I had almost forgotten how good it feels to write…
No, none of these things were ever in the plan, but then I am a notoriously poor planner. I’m so poor a planner, I stopped doing it years ago. I never planned to write, and I never planned to be sick, but since I’m doing the latter, I may as well make use of the enforced time spent on my over-sized derriere, and get some unplanned writing done.
As the old medical adage goes: every surgery has a silver lining.
For as long as I can remember, I’ve been something of a hypochondriac. I have, ever since I was a young child, worried and fretted about my health. Now, without wishing to be too stereotypical in my thinking (although I confess: a little stereotyping, along with home-made marmalade, helps me to feel safe), I have coped with this facet of my personality in a way that is frequently recognized as a male trait: I don’t tell doctors anything. There’s no use shaking your head and tut-tutting at the page; I’m not here with you, in fact I wrote this some time ago. But, anyway, I have been stuck in this particular rut for more decades than I prefer to count.
Until a few months ago. What began as a routine eyesight test for a new pair of glasses (going to the optometrist has never held much terror for me) suddenly took on a life of its own. Referral to a specialist resulted in a diagnosis of a stroke (what? eek!) and a second referral. A trip to Nanaimo to see a more special specialist had me being pushed into a CT scanner before lunch, and then after lunch being told that they had discovered a three centimetre tumour at the base of my brain. At that stage, it seemed too late to point out that I only wanted a new pair of glasses…
My reluctance to speak to doctors was entirely overwhelmed by what followed: surgery and ten days in hospital followed by…emergency surgery and a week in hospital (which, to be blunt, I felt was taking the joke too far). During that six/seven week period, my medical status was laid bare (along with other parts of me, not least my reticence to discuss symptoms for fear of being told bad news) and my reluctance to engage with the medical world was trampled underfoot.
The surgeries and recovery periods were no bed of roses (excuse me if my fingers tremble a little as I remember), but my life was put back on track – or at least it will be once all my treatments are finished. Had I – as I was accustomed to doing - continued to ignore the symptoms that I had been experiencing for more than six months, the outcome would have been very different.
Out of these experiences has come a new appreciation for the depth of love that my lovely lady holds for me (something else I was really not very good at), the importance of moving forward with gratitude and positive purpose, and the startled, fresh understanding that enemas are really not very nice at all. I have learned a great deal, as has my immediate family; they have learned about me, and I have learned about them. In many ways, I am humbled, richer and hopefully wiser for the lessons that I have been taught.
One day, though, I shall wreak a terrible revenge on that surgeon and tell him my life story…
Lots of it. In fact, to use a medical term; shitloads of pain. But in completely the wrong place.
This is the enduring memory of regaining consciousness – or at least something approaching it – after spending (little did I know it at the time) twelve hours on the operating table. The very first thing I had become aware of was the pain – in fact I shall stick my head over the hyperbole parapet and use the word ‘agony’ – followed by lots and lots of noise and a voice shouting my name. Following instructions and opening my eyes, there was a vaguely familiar face – my friendly neighbourhood neurosurgeon, no less…
He is smiling, and as I lie there in a hot pool of pain, I hate him for looking so bloody happy. “It’s all over!” he yells over the background cacophony, momentarily freezing my heart as I think he’s telling me I am dying. “It went very well! We’re very pleased!” he bawls, his smile broadening in what I can tell even then is a rather forced attempt to reassure me. Exhausted by the effort of despising him with every cell in my body, I fall back into my world of agony, the like of which I cannot remember experiencing before.
But it hurts in the wrong place.
I know, for example, that I have had an operation on my head. I can just about recall that it was supposed to entail a graft being taken from my left hip. However, although my nose is completely blocked, my head doesn’t seem to be hurting – at least not that I can tell through the incessant clamour of screaming nerves in the region of my right hip. It doesn’t occur to me that they may have taken the graft from there instead (as it turns out, they haven’t), I’m too busy being very confused and just a little terrified about the depth of that brutal, unremitting pain.
There follows the briefest moment of unconsciousness (it turns out to have been another two hours during which I was – I am told - at least semi-conscious) of which I now have no memory whatsoever. Suddenly, I’m in a different room. I’m lying on my left side and I’m cold - very cold. The pain is still there, but a little less all-consuming. The hated face has gone, and to my startled delight, my world fills with the most wonderful sound I have ever heard. It is my wife’s voice, and she is calling my name (excuse me for a moment…I must stop typing here; there seems to be something in my eye). With an effort, I rise through the fog to meet her. After what feels like ten minutes, my eyes open, and there she is. I’m lying on my left side and she is bending over me, softly calling me. She is smiling as my eyes open, but even then, even with the background of pain and sluggish wakefulness, I can see the lie behind that smile. She is beautiful, she is wonderful and I can feel my tears pooling in my eyes. Just to know she is there is a huge help.
I am not alone.
She is deeply moved, scared and worried, I can see that much. Beyond her is my daughter, her face pale and shocked, and no wonder; before her lies little more than a remnant of the big, strong man she has grown up with. The man who has always protected her now stretched out on a bed, powerless and struggling. I remember my promise to myself and to my wife; I know what I must – what I should – do. As she leans to kiss my cheek, I try to speak but find my mouth painfully dry. “What did you say, my love?” she leans in again to try to hear me. “I’m still here!” I manage to whisper. A brief moment of shock passes over her face, followed by intense emotion as I try again. “I’m still in here!” My deepest fear – that I might not be the same person when I awoke – must be dispelled. I’m conscious of how terrible I must look, yet my focus is gripped by what she says next. “It’s been twelve hours! You were in for twelve hours!” she tells me, and it’s my turn to be shocked. Twelve bloody hours!
I’m forced to shift my attention again as my daughter steps forward and leans over me. “Hi dad!” she says in her soft, gentle voice, and behind her eyes I can see the tears waiting to flow. “Hello my gorgeous girl.” I croak, an emotional tremble making itself evident, and then again in case she too needs to know that the same person has returned to her life “I’m still in here!”. As her face dissolves in emotion, my eyes close and the room briefly becomes a place merely of confusing sounds. I can rest now. I have said what needs to be said. What I don’t know at that time is that the operation did indeed last twelve hours – having been scheduled for seven – and that my wife had been denied the chance to see me for another two hours while the post-operative team tried to stabilize me and make me comfortable. What agonies my daughter -and in particular my wife who had been waiting for fourteen hours - must have endured…
Next, my eyes open upon strangers’ faces. Someone shouts “…moving you in a moment! One, two, three, go!” and I am dragged backwards, reigniting the white hot fire in my hip. To my embarrassment, a loud groan of agony escapes from me, and darkness kindly falls once more.
When my eyes open yet again, I’m moving. Voices – two of them – are complaining about the bed upon which I’m lying. It’s the wrong type of bed, apparently – not intended for an ICU patient - I’m very heavy (agreed) and the combination is, apparently, difficult to steer. They are unhappily discussing their bad luck as I watch a clichéd scene of overhead lights passing from below my chin to above the top of my head. It’s reminiscent of a 1970s TV series, yet curiously reassuring; I’m moving away from the source of my distress, moving towards the next steps in my healing journey.
The worst is, I hope, over. A short journey in a brightly-lit elevator, another brief trip underneath stereotypical overhead lighting and into a dimly lit space – suddenly accompanied by muted beeping sounds - and then finally a brightly lit, small room. I have arrived in the Neurological Intensive Care Unit just as the anaesthetic is losing its insidious grip upon me. Faces gather around, intravenous drips and monitoring devices are attached by invisible hands. I am more aware than ever of my utter helplessness.
For the first of many, many times over the next ten days, the standard mental acuity questions begin. “What’s your full name? Can you tell me the date? Do you know where you are?” Groggily, I do my best to make myself understood through the combination of anaesthesia, a horrendously swollen and sore throat (intubation for such a long time apparently – and understandably - has that effect), a painful, dry mouth and my ever-present English accent.
My recovery -beginning with the longest night of my life - is officially under way…and my hip still hurts like hell.
Only after we had been given an explanation for my symptoms did we begin to properly face up to them and accept their severity. I had first noticed a decline in my energy levels at a damned inconvenient time; just as we were preparing to move house from suburbia and take up residence on a small island (yes, really) off the coast of British Columbia. The timing was poor in more ways than one; aside from it making important, moving -related everyday tasks (including work) far more troublesome than they had any right to be, it also gave me the perfect excuse to pretend it wasn’t really happening and to shrug it off as a combination of lack of sleep and advancing age.
Once we had moved house and had begun a planned extended break from work – with luxuries like a no0rmal sleep pattern thrown in as a bonus – things should have improved. But things did not. Again, with a strange twist of sardonic humour, the universe arranged for my wife and I to both undergo a period of extreme fatigue. Once more my symptoms were masked as we convinced ourselves that we were ‘decompressing’ after leaving the suburban way of life behind. It had never suited us, and fitting in with that whole ‘scene’ (man) had always been something of a deliberate effort for us both. It made sense to us that our eventual ‘escape’ had left us emotionally and to some extent physically exhausted.
In due course, my wife ‘recovered’ and regained her old energy levels. Her big fat (and getting fatter despite reducing his food intake) lummox of a husband, however, did not. In fact he got worse. I became more and more tired and listless. Mentally, I began to slow down too. Sleep came more and more easily to me and most strangely of all, my body changed shape at an alarming rate. What greeted me in the mirror one day was no longer something that I recognized as my own body. I was turning into a pear.
Through all this, as I have already mentioned, I became aware of a change in my eyesight. I had begun to not notice some things, and gradually my eyesight began to be consumed with a strange fogginess. From time to time I would think about it and conclude that I was simply aging, but for the overwhelming majority of the time I pretended that nothing was happening; that everything was really alright. Such is the lot of the hypochondriac in denial; I was too scared to face what I believed (something unknown yet fundamental) might be happening to me. I simply couldn’t face that reality, whatever it might be.
When my eyesight had deteriorated beyond the point of being ignored, I finally sought out professional advice and diagnosis. As it turned out, that initial diagnosis (a macular hole in my left eye) was completely wrong, but fortunately it entailed a referral to a more experienced specialist. His speculative diagnosis and referral to a neural ophthalmologist proved to be the game-changer, and a quick and painless CT scan revealed the truth about what was going on inside my head.
To be fair to the man, he was excellent. He showed us the images, gave us the news and discussed it with us in a compassionate yet professional way. He showed great empathy and patience, answering our questions gently and completely. We owe him our gratitude for the manner in which he dealt with the shocked couple before him. It was his office that we had left in a state of this-can’t-be-happening bewilderment, my life apparently in the balance, and with no positive absolutes to cling to. That was the moment when we had held each other and wept for a future that we thought had been ripped away from us. That was the moment I began to think about saying goodbye to my children.
Our next appointment was with the eminent surgeon, an appointment which first alerted us to the fact that the medical profession had decided what to do with me. Having steeled myself for an encounter with a grey-haired, rotund man (forgive my sexist moment) with impressively bristling eyebrows, I was surprised to find myself talking to a slim, fit man of approximately forty, who appeared be in possession of completely tamed eyebrow hairs as well as a cheerful, if business-like demeanour. The meeting was intense, filled with lots of information, lots of questions, and lots of…other stuff. Once it was over, I was completely exhausted, both emotionally and physically.
They were going to go into my head through my nose, for goodness’ sake! I’d never heard of such a thing – hell, I’d never even considered such a thing was possible! The need for urgency, however, was clear. My physical condition had deteriorated rapidly to the point where simply walking a few hundred metres left me physically drained, and sleep filled most of my days. I was, in effect, winding down to a complete stop.
Three weeks later, then, my beautiful, strong, wonderful lady and I arrived at the hospital in Vancouver at the appointed time. That time, by the way, was 5.30a.m. I registered my presence and we waited together until I was called into the pre-op room. There, this magnificent woman whom I am so proud top call my wife, helped me struggle out of my clothes (I had been reduced to stumbling about) and into the standard hospital dignity-absorbing gown. After twenty minutes of waiting and talking to one another against a backdrop of beeping monitors and hushed voices, we said our goodbyes (I struggling to hold it together – and I don’t mean the gown), she was escorted to a waiting room and I was wheeled on a gurney out of pre-op and admitted to hospital for the first time since I was a toddler. It’s fair to assume that I was somewhat apprehensive about having things pushed up my nose and into my skull.
At this point - I am advised by my erstwhile, medically-trained spouse, due to the drugs they gave me before anaesthetizing me – time starts misbehaving itself in my memory (what there is of it). I was semi-conscious when they wheeled me into the suite of operating theatres. Amid great hustle and bustle I asked whomever might be listening how many operating rooms there were (for some reason it suddenly seemed relevant), and being informed that there was a suite of twelve theatres. I recall being quietly terrified by the appearance of the suite, which to my addled mind had the appearance of a white-tiled butcher’s shop. Or abattoir.
Somebody greeted me in a hale-and-hearty kind of way as my immense gown-covered bulk arrived under the lights in THE room. I managed a feeble mumble in reply. A different voice began to talk to me and unseen hands began to pull at my hands and arms. The voice said “Now I’m just going to give you some medication in a moment.” and I watched an oxygen mask (which seemed far too small) descend onto my face – I swear it was exactly like a cheesy movie representation – I remember one breath, one blink, and then…