I write this first because it informs all else here in countless ways it's doubtful I’m even fully aware of yet, and which being in denial for many years I tried to hide, not least and most mistakenly from myself. I apologise if it seems autobiographical, and it inevitably is, but to not write it feels somehow disingenuous [duplicitous? underhand?], a denial of a very personal perspective, an agenda I may not consciously but will [must?] ineluctably adopt; and I have no wish to be accused of selling damaged goods as whole.
Am I damaged? I undoubtedly am, and reading on you will come to agree. And I believe it’s important to acknowledge this, both to know and accept who we are and frame any conversation we might have. We all write from one point or another, and whilst we pretend reason is universal it really isn’t, its patterns may be and are certainly well established, but its foundations shift endlessly with changing knowledge, faith, and experience, floating in an ungrounded bubble untethered from any epistemic truth. This is simply the pragmatic approach to almost all contemporary debate (at least that divorced from the hard sciences) where neither the number nor interaction of variables has been properly categorised or understood; the various systems - social, psychological, moral are simply too complex to be mapped and quantified.
Essentially this is how we all argue - assume those to whom we speak adopt positions sufficiently similar to our own as to be considered virtually universal - hell this is precisely the mechanism of language our most very base assumption - it is mis/translated more or less imprecisely by every one of us, but at least until we develop the technology for direct mind to mind conceptual transfer (which would still be incomplete and variably interpreted) it remains despite this limitation the principle vehicle by which we transmit thought.
That we so seldom encounter arguments prefaced by much discussion of assumptions, of terms, of epistemic foundation or method demonstrates the ubiquity of this ‘common sense’ pragmatic approach; indeed even those theorists prone to setting themselves up in opposition to this, those weavers of ‘common sense’ straw-men who claim through their intellect some deeper foundation for their thought fall prey to precisely the same logic they are so apt to deride - for there is no reason free of prejudice, we cannot no matter how we try escape the constraints of our own mind, no matter what we may care to think, or care for others to think.
Sometimes though experience stands so far outside this common ground it defies all assumptions of universality. It’s a truism that all experience escapes language, and it does, yet somehow amongst the slipperiness between syllable and signified we conjure oceans of meaning that themselves escape and overflow their lexical cause. Such is the language of poetry and song.
Yet sometimes language isn’t simply surpassed, it is found woefully inadequate, and then no framework exists for understanding or contextualising events, and no words exist for processing; or at least those words that do exist remain so poorly understood as to be rendered almost meaningless.
What is fear but a summation of somatic responses, an unease in our guts, a coldness to our extremities as blood vessels constrict directing oxygen to muscle and mind. We are awake, hyperaware, our brains awash with blood and hormones our thoughts race, so many more calculations per second, such heightened perception, yet this is written off in a single word that in no way equates to this experience, a word that apparently retains meaning even for those who have almost no knowledge these sensations. It then becomes truly an empty signifier, a marker only of difference, a meaningless construct within a wider discourse.
We cannot simply look at fear, or love, or hate, or happiness, as we can a giraffe, index it, cut it out from it's background and state categorically 'this is fear'. No, first we must experience it, understand its actions on our own bodies, its limits and vagaries - to those unknowing it comes almost as a revelation 'so THAT was fear'. But there are greater emotions than this, there is horror, and terror, and despair; and in the most part we have no experience of these, no idea of what we speak; or worse we have lived them vicariously, by proxy through word and screen, such that we believe we know, believe we understand them, little knowing that all we see are but shadows cast upon a wall. In truth when we meet them, we meet them as the blind might meet an image once their vision is restored.
We showed S.B. several kodachrome transparencies of objects and scenes familiar to sighted people but never seen by him. They were shown by projection.
Slide 1. The Interior of a Cathedral (Hereford). He said: “Is it a building with lights in it? What’s all that gold, is it the sun?” (The lighting was in fact rather gold-coloured sunlight). He took a stained glass window to be a door in a church. (This might have been from the common gothic carving to be found in Victorian churches and school doors.) He was rather puzzled by what he thought was a door, and asked: “Why should it have lines down it?”
Slide 2. The Cambridge “Backs” showing River and King’s Bridge. He made nothing of this. He did not realize that the scene was of a river, and did not recognise water or bridge. We named the water and the bridge to him, pointing them out.
Slide 3. Evening Scene of Malvern Hills. “This is a landscape is it? I can only tell fields by the colour. What’s this gold colour?” He liked the green, but could name nothing on the picture.
Slide 4. The Cambridge “Backs” showing Trinity Bridge. This time he immediately, though with a trace of uncertainty, identified the water as water, and pointing to the double arched bridge said: “Are those bridges again?”
So far as we could tell S.B. had no idea which objects lay in front of or behind other objects in any of the colour pictures. He showed pleasure at green foliage, but could make very little of buildings or other objects. We formed the impression that he saw little more than patches of colour.1
It remains the most extraordinary day of my life, a day even as it happened I thought part curse, part blessing, a day, a moment, a pivot around which everything else turned and after which nothing would ever, or could ever be the same; least of all myself in ways even yet I do not fully understand. A curse? That should become obvious. But a blessing? Well, I believed - maybe I still do - that so unique an experience was somehow precious, in a sense a privilege to live through, a passage to a rare and special place. Maybe that’s trying to say too much, maybe amidst the pain I clung like this to hope, but it did inform my experience such that even as it happened I opened and emptied my mind allowing the sensations and emotions to wash over and through me, experiencing as best I might the finest details of that day, absorbing all I could. Or so I told myself, perhaps this was simply the effect of the increased blood flow and oxygen to my brain, perhaps I could not help myself, could not help this hyperawareness it was simply a product of where I was and what was happening, and that even here I tried to cling to some sense of agency, some sense of control, when in reality there was none. I wasn't the subject, I was in fact the object, pure and simple. This was my escape, but it was no escape at all.
Would that I could have blocked it out, have slipped into unconsciousness, or drowned it in noise, but that was not within my gift. I was instead more present than I've ever been and a part of me is present there still, a part of me feels I have never not been there.
I remember the lightness of the morning, the brightness of the world, a kind of hyperreality but at the same time distance, as though I existed on a different plane to those around me. An unreality brought on perhaps by my fasting coupled to the ever rising levels of adrenalin, tightening and twitching muscles but at the same time granting that peculiar sense of weightlessness that somehow derives from our preparedness for action. My mind raced too, this way and that, without focus, without concentration, people spoke and I answered, not really hearing, not really engaged, my thoughts elsewhere, amidst a torrent of dreams, fears, and nightmares, already replaying the events to come and that had lead here, frantic hopes and despairs. Perhaps the screaming had already started, the isolation and detachment begun.
No-matter, I think I passed for normal, at least as normal as might be expected; but I felt as one condemned, walking those empty hours awaiting a fate that draws near and can no longer be postponed - but too slowly, so slowly. I just want this to be done, to be finished, I want time to contract as it does when we sleep, for hours to speed past as seconds, but instead I am hyperaware, and each moment so full as to take an eternity in passing.
Of course I’m asked: ‘How are you feeling?’ with the inevitable answer ‘Fine.’ A trope, a cliché I know, but unspoken I can see the sympathy in their eyes, and I lack the words, or if not realise that to explain I’d have to examine the feelings washing through me and perhaps doing so breakdown: this is not the time (that will come, through choice or exhaustion - but it will come.). For now I must detach myself from the fear gnawing at my flesh, for today I will have part of my face removed. I will lie still as a doctor slowly, carefully, cuts away slices of my face. How can I share this feeling, you might imagine you can imagine it, but truth be told, you cannot - there is a visceral aspect to terror (I think that is what it is) that always escapes such dreams. It haunts my present and my future swelling as the minutes pass away, as the seconds scratch by becoming more real, an unbearable darkness as the world closes in. So I breathe, slowly in. Out. The velvet softness of the air as it moves so gently over the skin inside my nose, cools the dampness at the back of my throat, slips down into my lungs. So I am still, yet raging. Calm but drowning in a boiling torrent of emotion, the like of which we can never prepare for. Or expect. Or escape.
As long as I’m breathing, nothing matters.
Am I empty, it’s so quiet in here? I am alone in here with my darkness. Yes I know you are here, but I am alone in this place, you cannot come with me, nor would I wish that upon you. I see the fear in your eyes, we share a weak smile.
Then it is time.
‘Would you like to come through?’
Of course no. But there is no escape. Walking feels hard somehow, my body almost weightless, but my steps uncertain and movement awkward, as if too considered, too conscious. Seldom have I felt so alive, and yet so detached, as if time runs more slowly within than without. I sit and then lie on the surgeons table, blinking into unreal lights.
September 17th 2004 was a Friday. It was also the opening day of that years Ryder Cup, a fact brought to my attention a few weeks earlier at my final preoperative assessment with the dermatologist excising the basal cell carcinoma this morning. It transpired that he was a great golf fan, and player. I was not, although I had in the past a passing interest in the Ryder Cup, that competition when golf surpasses its status as an individual sport, as well as being drawn to the seeming togetherness of the European team in contrast to the often fractured relations between the United States players. A rare international sport, that curiously transcends nationalism.
‘You should probably close your eyes.’ With a smell of alcohol they swab my face, but then ever curious I open my eyes and strain to watch whilst Dr T. prepares a syringe to anaesthetise my nose, as he does he runs through the pairings for the morning fourballs. He talks of Woods and Montgomerie, Garcia and Westwood. I mumble my opinion for what it’s worth, then fall into silence as I strain to watch the tip of the needle as it travels an arc to the side of my nose. I close my eyes, alone in the darkness. I feel the first piercing of skin, the slightest spark of pain, then the spreading cold of the injection. He withdraws and injects again, and again, and again, a series spiralling out each within the numbed area of the last. I had expected far worse, this wasn’t the rushed and clumsily administered jaw scraping work I’d encountered too often at the dentist, this was considered and considerate, patient and steady, allowing the anaesthetic to gently seep through my flesh.
It was done, and I would wait. Wanting to touch my face one last time, a kind of farewell, whilst I contort my mouth and eye, testing the numbness as it spreads through and around my nose, creeping across my cheek, through my top lip. Feeling in its workings the final moments of this life before drifting ineluctably away. They seem so precious now, these few moments before everything changed. The very last of a life I can never revisit, when my face was whole, and my self shrouded in the anonymity of normal; before I learnt what it is not to be human, before I understood that this were even possible, as I doubt many, if any, of you do now.
And then it came. That moment.
A buzz of junior doctors and medical staff around me.
I shall attempt to describe the anguish I now felt, although I fear the words will always escape me, for it seems they do not exist. In part because I can’t imagine that this is something we are ‘supposed’ to know, that we have adapted to properly process or to understand. I cannot think how such a thing, or anything truly similar could occur in nature - we might be savaged by a wild beast, suffer some horrible accident, or injury of war - all of which may be more terrible in their way, and easily more injurious; but, I think we are somehow adapted for this. There are mechanisms of mind and body - nervous, endocrine, neuro-chemical, psychological - that have evolved over thousands of millennia to cope with sudden trauma - pain, anger, shock, or at extremes unconsciousness, and coma. This isn’t to belittle these events, just to suggest that we are, at least in some ways, adapted to suffer, comprehend, recover, and perhaps even imagine such stressors as they exist within the sphere of normal human experience. Sometimes though they do not. Sometimes individuals live through events for which we are not adapted, which exceed our capacity to manage - biologically, emotionally, or psychologically - at the time, or to reconcile after the event. It is likely these that haunt us, burning unresolved in the dark hinterlands of consciousness causing a kind of smog that sits unwelcome over the rest of our lives. It is not impenetrable by any means, or often overpowering, but it is always there however slightly, clouding everything we do; and sometimes, always too often, it rises unbidden and we find ourselves drowning once more in a tempest we would rather forget.
I feel his gloved hands on my face, the slight looseness of the rubber as he stretches the skin of my nose, prodding and pushing, deciding the best angle of attack. My lips are slightly parted, my mouth drying as I breathe quick and shallow, my heart racing pointlessly, its beat weak, staccato, curtailed. A pause. Silence. His hands move into position, the tip of a blade rests a little above halfway between the bridge and tip of my nose to the left hand side, angled slightly inwards. I feel my skin bend under its pressure, just a little, a little more, resisting puncture, then a sudden nauseating give as the scalpel slides into my flesh.
[How curious is our attitude to pain, our understanding of pain. We think it has no reason, save to act as an alarm. We consider it a nuisance, to be conquered, an inconvenience at best. It was with breaking my arm that I finally came to properly understand its purpose, and to wonder at its beauty, or rather to marvel at its genius. Great pain is unbearable, it floods our consciousness, we enter what is likely a state of shock and the world seems to fade - we talk often of viewing things through a fog of pain - it seems to dampen all other emotion and sensation, or at least drown them with its overwhelming simplicity. It suppresses it would seem both thought and feeling - a curse that debilitates with headaches, but a blessing when suffering trauma. As I fell and in its aftermath I felt the pain, the shock, the numbness of mind; but I didn’t feel the bone break, or slide displaced into my joint. I felt the great pain as I cycled on to work, but I didn’t feel the horrible wrongness of my arm, though doubtless the nerves exist to do so. I wonder if these are things we are not meant to feel, to experience, and my memory is only of pain, sudden, dull, unbearable pain. Any details are vague, if recalled at all; the memory, without emotion.]
There is no pain, but a horrible vertiginous realisation that I feel not nothing, but everything. No pain, no, but everything else so extraordinarily vividly. Every push and tug of the knife, the opening and falling away of my flesh. The warmth of a trickle of blood as it creeps across and stalls upon my cheek, threatening my eye. I brace myself whilst it builds and hesitates on the curve of my cheekbone, before running suddenly to fill the dip at the inner corner of my left eye. I tense and expect pain, a burning sensation to spread with the blood across the surface of my cornea, instead I feel a sickly pleasant warmth indistinguishable from tears, and a strangely calm and detached thought rises in my mind; of course blood and tears are in balance, they rise from the same source, and I wonder idly now if I were to open my eye would the world be stained red?
A man cuts away the centre of my face, and I lie still, unmoving save the involuntary beating of my heart, and the slow movement of air through my lungs. I am open, and within me rises in silence a deep animal scream, spreading from the depths of my stomach until its noise fills every distant fibre of my being. A man cuts away the centre of my face, and I feel every movement, every delicate cut, every shift in the weight of his hands. The future... it, falls away, there is no continuity. I am not who I was, who I always expected to be. My face, what is happening. A man cuts away the centre of my face. There's a feeling of wrongness that escapes all forms, a vile nausea that's twists through my forearms, and rises, a black vomit through my soul. Disgust? No it's so much more than that. Anguish? Perhaps. These words lose meaning, yet I can close my eyes and be there, falling ever backwards into this darkness. Whilst a man cuts away the centre of my face I lie still, silent but for the breath between my drying lips.
A pull, a falling away, a different type of cut as he severs the last connection of this cancer gristled lump of face from the bloody wound that is now my nose. They work quickly wiping away blood, staunching its flow.
'Here.' A prod to the side of my nose. A crackling zip, and the acrid smell of my own scorched flesh fills the room. I'm astonished, they are of course cauterising the wound. 'Here.' Zap. 'Here.' This is how I smell when I burn. The curious smell of cooking human meat.
This is but the prelude, the brief introduction to the real work that now begins. A new blade, and he starts afresh, cutting the finest sliver from the whole surface of the lesion, a bare millimetre peeling of flesh. He works slowly, carefully pulling and slicing, I feel my nostril opening as does so, mucus draining backwards to my throat. Then release, and the hands are gone with the sound of surgical instruments dropped upon trays. More cauterisation. The coldness of the the air against wet flesh before they place a gauze over the gaping hole in my face, and I can open my eyes, blinking in the brightness of the theatre’s glare. Disorientated, it seems I lay down here a lifetime ago, or perhaps in another world. I sit, steady myself, and stumble to wait whilst a pathologist stains and examines the finer slice taken from my nose. People talk, but all is lost amidst the incessant roar of bare emotion. It seems so distant somehow, and myself so tired, so tired although the day has hardly begun. After a time I am called back, the cancer is still present and they need to remove more. So I lie once more on the surgeons table, and it starts all over again.
Five more times I am called back, five more times the hole in my face grows a little wider, a little deeper; the hole in my soul a little darker; the time before a little more distant. I know the plastic surgeons plans will have to change, the damage is too extensive, the spread of the cancer to far, the lesion too great. As I shuffle out after my third or forth excision I hear an assistant whisper her question to the consultant: ‘Why’s it so deep?’
‘It’s what happens if you leave it for two years.’
Is that anger? No we should forgive. Would that we could forget then also, and be free of the past. Now that would be a blessing - to forget; now that is divine. But… do I forgive? Well her, yes, but him? I don’t know, does he deserve my forgiveness? In that moment, amidst the maelstrom I could not grant it, instead anguish became coloured by ire.
In April 2002 I visited my GP with what seemed to be a small but persistent pimple on the side of my nose. It was reddish, raised, and intermittently sore and inflamed. I’d been told by someone who ought to know that it was worth getting checked out, that it could be, although unlikely, a basal cell carcinoma. I explained my worries to the GP, who briefly examined my nose, ummed and ahhed a little, decided he wasn’t sure either way and that it was safer to refer me to see a dermatologist who most likely would know better than he.
A month or so later I visited Dr P***-******, and yes I do remember her name, I always remembered her name, even then before all the dominoes fell, even then this seemed a curious and significant event. She was small, thin, fragile seeming, with a mass of tightly curled hair, pin-point freckles over her face, and large uncertain eyes behind her glasses. She examined my nose; ‘hmmm, maybe, it looks, you’re very young, but this does, you’re 30, yes just, it does, but I’m not sure, do you mind if I ask my colleague?’
She disappeared next door for a moment, to return with the consultant. He seemed annoyed to be disturbed, churlish, exasperated with his junior, I felt an unwitting party to their quietly seething tension. He was kurt, not introducing himself, simply ‘May I?’ as he too examined my nose. Then he spoke to her, not to me, never to me. I remember how strange it felt to sit watching, listening as they discussed my face, my lesion. He thought I was too young, it was very unlikely - ‘You do a biopsy if you want, he’s too young, it looks like a pimple, but it’s up to you.’ That was it. I felt strangely humiliated, as though I was wasting his time, wasting their time, wasting resources. Dr P***-****** seemed a little abashed too, she had another look, frowned a little, decided to do a biopsy just to check, just to be sure.
In mid June I do return for a biopsy, performed with a strange instrument, much smaller but not at all dissimilar to an apple corer. A core is taken from my nose and the hole sutured. Two tied black threads poke from my nose, as though a spider has died under the flesh, only its legs protruding. I’m amused to holiday like this, amused by the looks of shock and surprise that greet me in the shops and inns of Mallaig and Ardnamurchan. Perhaps most importantly I’m told they’ll write if there’s anything awry, but that no news is good news. I heard nothing, my GP heard nothing, the bore hole healed over, leaving a small circular scar. I wondered about my nose, but thought too of that ill tempered consultant, speaking so dismissively all the while knowing I couldn’t help but hear. Was I wasting their time? Then I awoke one morning to find the scar gone and a five millimetre, hemispherical, raw, wet crater in its place.
Two more years. Two more years gnawing its rotten tendrils through my face. Were he less condescending who knows, maybe a few stitches, a small scar, something within the boundaries of normal, not the blackness of despair as I’m called back to the surgeons table again.
Eventually it was done and I travelled across Manchester, my hollowed out face open beneath a dressing, to another hospital, another surgeon, and reconstruction. I remember long hours waiting for her assessment, for the call to theatre, slowly closing down, the world becoming small and darker with every passing moment. Just wanting it to be gone, to be past. The chirpy porter wheeling me through plastic doors, and positive pressure, and a space nothing if not reminiscent of an industrial butchers, or perhaps the abattoirs I glimpsed as a youth. Counting backwards into unconsciousness, sweet nothingness.
Waking again in the same grim cavernous space - I would visit this place again in consciousness a few weeks later when the loop that fed blood the the flap grafted to my nose was finally cut - then returned to my rooms, smacked up on morphine, grinning stupidly on my bed. Visitors spoke, seemed concerned, were sweet and caring. Blood ran incessantly down over my lips from a drain protruding from the junction of reconstructive flap and crease between my nostrils and cheek. Wadding was placed around my neck. I remember a strange half consciousness, if I slept I choked as blood trickled slowly into my open mouth, yet exhausted and disoriented I was none-the-less barely awake. I remember the length of those nights, alone, utterly spent, my face smashed, a mass of numb pain beneath dressings and bandages that seemed more for the benefit of others than myself, untouched and untouchable. Blood soaking into my sheets, crusting rivulets flowing over my lips, my chin, my neck. And all those long empty hours in the darkness, the television flickers, and somehow in the confusion, as the blood bubbles and congeals on my lips, as I long for sleep but cough endlessly into wakefulness, as I grope hopelessly for a future torn beyond recognition, it seems as the putts fall, that somehow in the misery and darkness, that somehow, so far away, the Ryder cup is being won, as if being won for me. What strange solace, a flicker of light in the blackness around me, and alone in the night I weep soft tears of joy, for Europe, and the realisation that, even here, hope persists.
Today is twelve years, and yet not a day passes, not a day, when I don’t think of that knife. The trigger, if that’s what it is runs through the middle of my face, it twitches, aches, itches, I cannot hide it, or hide from it, a child stares, a double-take, a second of shock or surprise, disgust (oh yes), avoidance; and with each of those the threat of the knife, of those awful moments creeping once more into consciousness. For a time I castigated myself for this indulgence, before I realised these memories rose unwanted and unbidden.
There is something in disfigurement that those not so blessed, the unfigured if you will, can never quite grasp, something in the lived experience that will always escape them no matter how they try, or how sensitive, empathic, imaginative, or wise they consider themselves to be. I’m certain they can imagine the moments, the pain and rising anger at a snide remark, or when a group of drunken students decides to mock your halloween costume as you’re waiting one cold October night for the bus home - they can imagine this, but the persistent ineluctability of difference, they cannot. For it is always there, there can be no escape, there is no going back. We - the disfigured - are forever denied the luxury of walking around secure in the bliss of anonymous normality, in fact they - the ‘normal’ - are likely so blind to this pleasure that they barely can conceive of its existence; but when you’ve seen enough of the double-takes, the stares, the embarrassment, caused enough clear discomfort in perfect strangers, aroused suspicion and ridicule, been treated as some contagious 'thing', then you become wary, come if not quite to expect it, at least to be aware that it might happen, at any moment, with anyone. So you become guarded, and in crowds perhaps hyperaware, or at least prepared. And it’s tiring, emotionally and physically exhausting, as if living under constant threat.
Don’t misunderstand me, this isn’t to lay blame, I believe many of these reactions, the curiosity, the desire to stare, to understand, the awkward embarrassment, not knowing how to ask or what to say, are precisely normal, and reactions I share myself when meeting others who are disfigured or otherwise divergent. A few months after these operations, when physical scars were healed if still fresh, I travelled to Buffalo for an installation job at the Albright-Knox Gallery. Working there was a technician with scars of a similar severity to my own. It seemed to me there was an unspoken bond, something in the way we looked, smiled, greeted each other, something in the body language that spoke of shared experience; but for four days we circled warily, unable or unwilling to speak, wanting to talk, but unsure how, drawn together, but each uncertain how to cross the bridge that united us.
For myself, I felt ashamed, ashamed to have had cancer. I would rather not speak and be thought to have had an accident, to have suffered some ill chance that could have befallen any - ‘but for the grace of god’. Except it wasn’t, I have, or at least I felt I had, a flaw written in the genes through every cell in my body. In this sense it was in fact my own fault, some part of me, some failure of code lent itself to such cancers, and that my truth, my true fate was to have aged with an ever growing wound in the centre of my face, an open and suppurating ulcer. Had I been born little more than a century before this would indeed have been my destiny, and perhaps none could have borne to look at me. Would I have been cast out, taken for a leper, a syphilitic, the misshapen carrier of some strange and horrible disease? Should I now be scrabbling to survive amongst the shadows and far from decent folk? No? I cheated this fate only by virtue of the late date of my birth. So better to stay silent and have these scars thought an accident - that way I am perhaps no less a person; than to speak out and be known to be defective, a dead end who survives only by cutting the ill written truth from the very centre of their face.
But I also feared she might hide a similar ‘truth’, and that in speaking of our scars, greater wounds might open, be they fresh and little understood such as were my own, or old and deep running. This is likely the crux, the reason so few ever ask, though they peer curiously if surreptitiously at the marks across my face, they sense the trauma but are uncertain how or if they might speak of it; scared to offend, to seem insensitive, or worse still to trigger. So they remain silent, their questions unresolved. Yet we know the questions are there, we sense it in the stares, the glance away as we meet their eyes, the embarrassed admonishment of an inquisitive child, or else the simple fact that when an arm is in a sling or cast, the questions seem endless, from friends, acquaintances, even strangers in shops, but those very same people will greet facial scars with silence, yet they must notice them, they are not hiding in plain sight. The silence becomes deeply oppressive, a reminder in itself, although not one to which I would attach blame. I believe the curiosity and the awkwardness to be normal, even sympathetic responses, but this does not render them any less alienating, in that they amplify the sense of otherness whilst potentially refocussing the disfigured mind not only upon the wound and its the trauma, but upon the unpleasant consequences it has since delivered, the laughs, the ridicule, the cruel words, the barman who farcically will NOT look at my face. Until with each meeting, each fresh interaction, this spectre too raises it head, will they - to put it in its simplest terms - will they consider me human, to be one of them; because to be blunt, it is quite plain that some do not.
Maybe this surprises you, I doubt if it would surprise any that have suffered similar persistent and insidious discrimination. In fact there were times in the first months, even years, after the operations, that I began to doubt even my own humanity. What does this mean? It means I was feeling so alienated, so destabilised in my identity, so disoriented by the reactions of strangers, that I began to believe myself excluded permanently from normal interactions with my fellow human beings. It’s very hard to explain, but I felt more like a thing than a person, as if I had no right to look at them, to smile at them, to expect interest or friendship, I felt like something else, less than human, something undeserving of humanity. Perhaps you think I exaggerate, but aren’t these the very demons touched upon (albeit clumsily) in Deadpool, who hides from his past and from his girl, thinking himself a monster. Maybe I don’t look too bad, maybe I don’t look that bad. Honestly I cannot tell, except that the reflection I then saw in the mirror, shocked and disappointed me every time, the schism between expectation and reality was too wide; people had changed, their behaviour towards and around me was undeniably altered; and I lived it seemed in a minority of one, I saw so few others like myself, those brief moments of solidarity of shared understanding were so rare (at most once or twice a year) that I lived out this slow adjustment in profound isolation. Lacking the wisdom to seek support there were none with whom I could share these experiences, none who had walked a similar path, who consequently could share a joke, or unspoken understanding. Mostly I was alone with these thoughts.
I'll end with one of the most curious aspects of this whole episode, and one that if it doesn't trouble me, still confounds even to this day, mainly because it seems remarkable for its stupidity or lack of awareness. I had been an artist, not a successful artist perhaps, but I had had opportunities, and had opportunities I could have pursued had I so wished. Irrespective, I made art, I thought about art, every single day, and had done for years, for in excess of a decade. It was my life, my passion, it consumed my thought, my time, and my resources. And then it stopped. Not deliberately, or even consciously, I didn’t even notice it had for a time, I certainly never intended it to; but at last I realised I hadn’t made anything at all for well over five years, and slowly it dawned on me that the last time I’d made art was the 15th of September 2004, the night before I’d left London on the journey north to the hospital. It was a piece I’d left unfinished on my return, abandoned, and is now destroyed, but it remains the last art I intentionally made. I had never to this point made a connection, and suddenly it seemed undeniable, but how had this escaped me, why had I been so blind? I had made things, beautiful things, ambitious things, but wholly useful things without content and devoid of meaning, simple, uncomplicated objects. I had tried, I hadn’t lost the urge to communicate, but I could find no language to convey what I had seen, or where briefly I had been. I sat and relived those long moments on the surgeons table, felt my soul tearing, it seemed all that I had to say. As I dreamed of the art I might make this filled my mind, the knife in my face, the horror surging through my flesh; and why would I want to make art of this? Suffer endless months of making, endlessly dreaming these dreams. Who would do that? I had nothing else. I built a kayak, purely because it was empty, a process absorbed in the making, I built it, I realise now, precisely because it was not art.
I’m not sure sure what my point is, maybe just to open the window a little, explain a little the feelings and complexities of the disfigured, grant some insight into the anxieties we suffer, and the strange way the mind adapts and processes trauma. I guess mostly I’m just hoping for a little understanding, that when you see people like me, the freaks, the scarred, the disabled, you remember that we are human too, and may have suffered more than most in getting here. It’s ok to be curious, we would be, and are too, but if you stare and catch our eye, then smile, not in pity, but in solidarity and maybe, welcome; but remember the scars you see are memories writ in flesh and of the scars we carry they are likely the least deep and first to heal, so when we seem strange and distant, silent, withdrawn, or morose, it may be we are haunted by things of which we cannot speak, lacking both the words and strength to speak them. There is no doubt that some are prejudiced and cruel, and it leaves us, the disfigured, guarded and uncertain. Could you, who is reading this be one of these? We don’t know, and for every spoken slight, how many more stay silent, muttered only in your minds. Do we withhold trust, or do we numb ourselves, either choice is to draw back from the world, to be desensitised is to lose feeling, to distrust to lose faith. Perhaps we do a little of both.
Today is September 17th, a day like any other, so I will stand in the shop, greeting those that walk in, helping if I may. I will smile, and chat, and laugh, and at the end of the day, I will sit dead eyed and hollowed out upon the stairs and remember everything...2
- 1. Recovery from Early Blindness - A Case Study p.24, Gregory R. & Wallace J. Experimental Psychology Society Monograph No. 2, 1963.
- 2. Extract from a letter written to my family. It took 12 years to summon the strength to write. I can still barely speak of this.