Does it hurt, my mother asked me, without a question mark. She’s never asked me this, even when I was in severe pain as a child and a young boy, so to say I was somewhat taken aback would be equally somewhat of an understatement. That aside, I was nonetheless at a loss for what to say. Fortunately, we were talking over the phone and she couldn’t see the puzzled grimace contorting my face, pulling and tensing muscles in ways they are not supposed to either pull or tense. In that small pause between the non-question to which she didn’t really expect an answer and the forthcoming non-response I didn’t really expect to give a slew of possible answers nonetheless sped unimpeded through the confusion raging in my mind.
I was angry. I was angry in a dull undirected way. The way charcoal burns with a long slow heat, a dull red glow beneath a layer of downy silver ash. It lingered, unending, somewhere deep inside me. It was an anger fully justified, an anger directed against not only a person but against the failed, and failing, institution buoyed up by fundamentalist beliefs and emotions like some national esoteric religion. It was an anger fuelled by the loss of my health and probably my life simply because my GP was grossly ignorant and the National Health Service, beneath its layer upon layer of self-gratification and self-congratulation had failed to demonstrate even the most basic service it was supposed to provide. Of course, there were excuses. There always are. We were in the midst of a Moral Panic, although not at the time I first approached my GP with my concerns. It was the government’s fault, which ignores the fact that healthcare in Wales is devolved. I was angry at the humiliation wreaked upon me by my GP the first time I approached them to explain I had blood in my semen and was experience some burning sensation when urinating. They sent me to AE without doing an examination. A few weeks later I approached my GP and second time and told them of my concerns. They said, ‘don’t worry’ and told me they could refer me to a urologist but it would take at least nine months. I know now that the symptoms I presented with are well documented and considered red flags and a specific course of investigation should be followed. But not, apparently, by NHS Wales. So, yes, I was angry. And scared.
More than scared I was terrified. That paralysing creeping terror that starts in an empty space somewhere deep inside and yet is at the same time removed, that spreads through your entire being like slow poured concrete; heavy, dull, cold. What I was scared of I didn’t know. That fear, that terror, was, is, nameless. Formless. And relentless. It never leaves. It lurks, ever present. I can sense it always somewhere in the shadows. And yet, and I didn’t know this then even though I know it now, you, that is to say I, became, become, not so much immune to it as inured to it. It is something you learn to live with. It becomes part of you and in becoming part of you becomes accepted by you. It no longer haunts, no longer grinds away in the deep recesses of the long, lonely nights and the bright aching days. No more does it suddenly emerge unexpectedly, washing over you like a tsunami. Unstoppable. But it never goes away. It comes to manifest in a more concrete form, a nameable thing that can be bounded and held at arm’s length, quickly identified for what it is. This is fear, this is terror, this is the unknown, the uncertainty. This is the seeking for reassurance when there is none to be given for that which lurks inside me, inside you, that which does not bend so readily to the capricious whims of those we pay to care for us.
As time went on, the clock ticking almost silently in the background, I became aware of the accompanying sense of shame and embarrassment. I didn’t want to tell people, and when I did I could feel them recoil as though they feared they might be somehow not infected but contaminated by the anomaly I carried inside me. I wanted at one and the same time to tell people, to let everybody know, to get it out there so that the burden would be lessened. It was as though by telling people of my ailment I might somehow be relieved not of the thing itself but of the burden of acknowledging it to myself and to myself alone. The more I shared, though, the greater the shame and embarrassment. Guilt. I felt defiled, unclean, unholy. At times I felt I risked public humiliation, perhaps driven by my initial attempts to get a GP appointment, being denied one by the aggressive and hostile receptionist, and then, when I went down to the surgery to insist, being asked to state why I wanted to see the GP in front of a waiting room packed full of patients. There was a strong sense of having been violated by my GP, leaving a thin film of greasy grime coating me and no amount of cleansing could remove it. Whomsoever I spoke to, told, I knew could see this gritty, dirty layer covering me and as I told them they would step back, suck in their breath, flinch, draw away from me. I don’t want to know, they said, and I don’t want to be involved.
Behind the fear, the anger, the shame, and embarrassment lay a sense of desperate resignation. The very people tasked with, and paid to, protect my health had not simply failed me, they had fatally injured me. And I was powerless to address it. There was, is, no way to turn back the clock, to rerun events so they lead to a different outcome. There is no recompense for those failings, no justice. The only way open to me was to place yet further trust in those same people. Either that or accept an even greater truncation of the time remaining available to me. This tremendous and overwhelming sense of powerlessness numbed me in each and every way. It dulled my senses so that the world flattened and lost colour. This was reminiscent of the bleak grey landscape one experiences in the depths of severe depression, but it was different. It was different because it permeated far deeper and far further than the colourless world of depression, and it threw me back upon myself. I could not deny my own existence and my own role in the events unfolding around me because these events were, in a sense, the very essence of me. I felt a need to lash out, to flail around just to remind myself I was still alive. But whatever part of me I made use of in this way felt dull and leaden, like a limb beset with pins and needles. I found my vision closing in so that only the immediate future existed, right down to the minutes, the seconds, remaining in front of me. There was no tomorrow. No ‘later’. No ‘in a week’s time’. I was unable to make decisions because any decision could turn out to be meaningless as time slipped away from me like water between my open fingers. I had a thirst I could not quench and in knowing this lost all desire to quench it. Deep within this desperate numbness lay the very core of myself, my self, and I knew in this part of me that I was alone, truly alone. I realised that no matter how close we may find ourselves to others, to a special other, at any time and for however long there will come a time when we have to face the realisation that we enter this world alone, live our lives alone, and die alone. We are our only certainty.
I didn’t say any of this to my mother. It went through me in flash, a clear jagged bolt lighting up the space inside me. A rent across the fabric of my being that blazed so strong and fierce it hurt me to see it, to feel it. And it passed with the same dramatic instantaneous intensity as that with which it had appeared. As the power of it faded so too did all those thoughts, those understandings, contained as they were within that single brilliant moment. The raw immediacy of her not-question question faded and dimmed and with that came a different set of thoughts - what else, if not thoughts, am I to call them, these things, these angels and demons that come calling unannounced.
There is no way to explain that sense of, the realisation of, what it means to be truly alone. The knowing that beyond what you know as yourself there is nothing knowable. Within the confining walls of our own understanding of our own experience of our selves as a self there is nothing. Nothing is vast unechoing emptiness. It is the absence of space, the not void for even the void is nameable and therefore knowable. There is no name for the emptiness beyond our self. With this appreciation of what it means to be truly alone came a great selfishness. Not selfishness as we usually think of it, for that selfishness is small and petty and suggests a withholding of things from others in order to have them for oneself. It wasn’t like that. It was a selfishness that that had me keeping what was mine for me. All my thoughts, all my feelings, all my understandings, my way of seeing the world, they were all mine and mine alone. They were the only thing I had. I didn’t want to share these things that were, that are, part of me. I couldn’t. If I did that would lessen who I was, who I am. In part I think this was because the only me that existed was the me in the now. Being in the now was far from the wistful pink candyfloss land perpetuated by the modern best-selling creeds of agnostic meditative practices. It was a scary place that pressed in close around me, an inner skin that bounded my aloneness. With this came a great loneliness. A great regret. A sadness that the vision of my remaining life may not be met.
It was more than sadness. It was sorrow. I felt a tremendous sense of loss, a sense of loss for that which I had never had. I was mourning for something that had never been. It was like falling down a deep well into cold water and sinking ever so slowly deeper and deeper into the water. I knew I was deep in the well because far above me I could see a small circle of light; the mouth of the well. I knew I was in water because I could feel it buoying me up even as a sank deeper. I sank so slowly that the passage of time could not be measured. The small circle of light got no smaller but I knew it was getting further away as I sank still deeper. Around me was darkness and beyond that darkness nothing. I was alone and I was filled with a sense of sorrow far deeper than cold water of the bottomless well in which I was sinking, sinking so slowly I had the sensation of floating, floating in cold water looking up at the small circle of light and knowing that whatever was out there beyond the confines of the well was something I would not have the chance to know. Looking up at the light I felt beyond the sorrow and found a sense of longing, a longing for that which I did not know and I could not now know.
The longing ran deeper than the sadness, deeper than the sorrow. It plunged deeper than the cold water in the deep well. This was longing in the most profound sense of the word, a form of being without. It was, I suppose I can say, an absence. It was, like the sorrow, the feeling of missing something I had never had but even more than that it was feeling of wanting to return to something that had never been mine. I wanted to go back to the home that never was, return to the place where I was once happy, a place where I had never been. I wanted to be safe, to be at rest, to be comforted by my surrounds that were both familiar and ever changing, ever changing so that I could wonder at them – the incoming tide, the flow of a river through the seasons, the sound of migrating geese flying overhead, leaves rustling in the wind – and familiar, familiar to me as I was familiar to my self. I wanted to go home but I had no home to go to. I wanted to go to the home of my choosing, that small space I had carved out for myself in the world, an unchanging space I could return to and find that it was no different to when I left and would never be any different. Somewhere timeless, somewhere unspoilt, somewhere tucked away in a quiet corner, unassailed by the irrelevancies of modern so-called civilised life. Somewhere where I could be alone, lonely, sad, full of sorrow, and at peace with all of this and at peace with myself. Somewhere where I could be at rest. This was the place my father longed for and worried he would not find right up until he drew his final breath and at that moment, perhaps, found the release he had searched for all his life.
With the recognition of my longing, that form of being without, came a surprising sense of relief. Experiencing the longing, the sadness, the sorrow washed me clean of that grimy, gritty, greasy film that had covered me, that slick cowl of discontent and misery. I became aware of the sheer beauty of the meaning of being alone when faced with the knowing of mortality; that all life must end, that this is the way of things and the way of things has its own sadness and I had touched that sadness just for a moment, a moment of eternity. I felt as though all the world, all things, were funnelling into me and through me and out again. An endless flow of silver-gold gossamer specks, infinite in number, sparkling, flashing with light from within, pulsing to a beat only they could hear, flowing in and through me. All around the things both living and not-living journeying through their existence that inevitably would come to an end. Every thing, every object, that comes into this world must also leave this world for to exist is to manifest only briefly and in that briefest of moments, unnoticed in the great expanse of unending, yet finite, time, every thing has its purpose even if only to be manifest. And every thing can last only for a moment. No thing lasts forever. Nothing lasts forever. This is the sadness of things.
I wake up at night knowing I am going to miss what I have and what I do not have when I can no longer have either and knowing that none of it, none of them, were ever mine to have. I wake up at night completely alone, surrounded by my loneliness. I lie awake and cry when I think about my dog, how he has been such big part of our lives, and how empty life will be when he dies. It hurts when I think about family and how little we see of them, scattered as they are. It hurts when I think that I will build no Ozymandian monument to be lost in the sands of time – that mighty grasp for immortality that can but fail and will be forgotten and in the end is little more than a curiosity to those who follow. No great, no small, contribution to the betterment of our species have I made.
All of this hurts all of the time. Not because I wish it to be different. Not because I wish for any of these things. My only wish is for a quiet place in which to rest my head and say goodbye, somewhere I can look beyond the four walls, feel the wind, see the trees, hear the birds, smell the earth. Freedom in space. That will be enough. And every day hurts. Every hour. Every minute. Not in the way that physical pain hurts. For now, at least, I have been spared that. It hurts that I have lost that which I had and it hurts that I have lost that which I have never had and it hurts that I will lose that which I have now. So, when my mother asked, without it being a question, Does it hurt, I repeated her question without a question mark, after a short pause, and said, in response, Only when I laugh.
gail
