After a few days of living in a hospital bed it becomes a bit like a tent.
For the period during which the space of the body is immediately cocooned by safe transport and triage, to a place of refuge and medical intervention, it does not belong to the occupant any more than the occupant owns what is happening. For the time until a body under such conditions is brought to rest, into circumstances of medical stability that can be monitored, moved on into the next stage, to be further assessed, or scanned by whatever technologies are appropriate; until it can be managed into equilibrium and then discharged to make way for the next patient, the body is in a state of limbo, where the spectacle of medical technology is on full display – if it were only possible to keep up with what is going on – doctors work extremely hard at being doctors, with nursing and support staff together, concentrated entirely on finding out exactly what is has happened to any particular human being who has had the great misfortune to have been transported to this place.
It was on the second morning of my admission – two nights in – when I realised I was lying in a space very similar to a space I have regularly and with great pleasure occupied for over forty years.
After a few days more, a hospital bed that has become a tent, becomes part of a community of other such hospital beds that have been brought into assorted conditions of peace by their occupants in a manner most familiar to each, collectively doing their thing. All in this place are now finding out about the new normal conditions of existence, discovering what we no longer can do, what we will now have to do instead, coping with the aftereffects of medical intervention, learning about the assorted assistance devices with which we have been issued. Within the little space around each bed containing the standard furniture of bed table, armchair and night-chest, everybody moves into their own place to get on with their own thing, and the whole arrangement becomes like an encampment; like so many others on the planet, from music festivals to highland campsites, refugee camps and shanty towns, and any other place where people have been forced beyond their particular will by extreme or traumatic circumstances to come together, to make the best of where they find themselves now and to get on with being alive.
This is the first time I have experienced the role of cancer patient from within the cutting edge of this remarkable, and utterly confidence inspiring process. Hitherto, I have been seen it only as an outpatient and have seen only what an outpatient sees. Now that I have been pulled into the deep production of repair, care and recuperation that has been embodied in the constitutional and legal framework of our new country, I can feel nothing but pride: just over a week ago I collapsed on the street suffering from more pain than I can imagine; since then, scores of people have been working together to bring this condition under control and to make sure I emerge rested and autonomous, pain-free and comfortable before going home safely. All by virtue of the fact I live in this country. This is is not an attitude of indifferent commitment to carry out laws laid down in parliament, which have thus been subject to the vagaries of political choice and process; rather this is a reflection of the will of the Scottish people – our decision to enshrine in law this collective desire to look after each other, to provide care at the point of need whenever it arises to everybody who lives here, or who may have the misfortune to collapse on the street.
Inevitably, the first actual location I recall from the vista of my hospital tent is the one to which I always return in moments of extreme challenge, at the bealach to the west of Sgurr Na Lapaich between it and An Riabhachan, on the northern edge of the Mullardoch ridge, where I camped on the fourth night out going clockwise round the famous Dozen on a journey which I had planned to take in only three. But the weather turned bad so I had to drop my pace. I had also planned my trip at midsummer, just before that moron Cameron decided to clear the European question from his desk at about the same time, hoping in his vacuous idiocy that this would make it somehow go away, so he could get down to the business of government, unencumbered by so called eurosceptics, or by coalitions and compromises with labile Liberals. Knowing that my vote, or lack thereof would make no difference at all to the general outcome, knowing that I would always refuse to succumb to the binary logic of any Referendum ever again, not taking part in this referendum was a no brainer – why waste a trip to the hills to cast a meaningless vote, to save the career of the leader of a political party I detest?
Under extreme circumstances a tent becomes a place of haven and recovery, from which to gather warmth and fortitude for the next day’s traveling; under more benign conditions it becomes simply a temporary shelter against the elements; in good weather it becomes a veranda along any vista within which it is pitched. My many assorted tents have been pitched over the last forty years in more locations than I can remember – and not only in Scotland – in the Rockies and all over continental Europe too. Despite the unique location of each pitch, the different circumstances and conditions, the motivations for being there, each gave new succour for the night.
All such journeys now start at the aforementioned bealach; for here was the only place in recent memory I ever slept high on a mountain, and from which I thought I might not awake, but rather succumb to elements beyond control. Not that I ever gave up, not at all, I simply realised that I was in a much more vulnerable condition than I had realised, that had I not had my wits about me, conserved my resources and maintained my shelter against the onslaught of the weather, then I would perhaps have lain down, not to sleep but to die. But it was not to be. It was indeed a very, long, difficult night of dwindling fuel supplies, fitful sleep and depleting internal resources, but it did not kill me. I continue still to draw strength from the experience. Especially now in hospital where what is now necessary for me, beyond any compromise is, to tap in again to my native wit, employ my common sense and experience to ensure that I do not succumb to the ravages of disease, nor to the extreme interventions being used to treat it, not the side effects of these, the depressions and the mood swings; instead to learn how to manage the battery of medication I have now been prescribed to achieve the best balance of comfort for whatever my life is becoming.
I suppose I should be grateful to the Dutch urologist who told me with such apparent glee, and in no uncertain terms, that even if I took the medication I would be dead within three years. It would be so much better for my health not to be angry with him, not to be haunted still by his words, no longer to give them any more importance than any others. After all, what he told me turned out to be wrong. Spectacularly wrong!
Not only would I then free myself from the chains of this resentment, I would be more able to recognise the incredible journeys my reaction to those words has motivated, and to acknowledge the positive effects that have come to pass, not only for my own life, but for those who take strength from my continuing refusal to succumb to the deterministic logic of medical prognosis or who are inspired by the stories I tell about going to high places without lifting off the ground, about flying from the heights without being ungrounded.
I should then more clearly appreciate the emotional, spiritual and intellectual epiphanies I have experienced, viscerally, often reluctantly and almost always while climbing mountains. Surely I should be able to speak the truth of these as much as of my condition. Is it not my responsibility to document these journeys, to find the right words for what have been moments of real insight and enlightenment for me, so that others too may benefit? It has been easier at this blog to document and to share the emotional and spiritual moments on my journeys, as well as those intellectual trajectories of direct relevance to my encounters with the medical establishment. The others are much more complex and difficult to describe; where I have been able to point to these at all, I feel they are either too glibly expressed, almost platitudinous, or become too serious, leaving many readers in the dark.
On the other hand, despite my best efforts to overcome it, the anger towards the man who gave me the wrong bad news all those years ago is sometimes still intense, and from time to time recurs. I try to fathom why this should be so, why his words haunt me still as they do, why they have been so disabling. It is because they contain a double blow; not only, according to his dubious wisdom, can the doctors do nothing except offer palliation by rote protocol, my own agency is powerless, there is nothing anybody can do against the inevitable progression of the disease, no medication will do anything but suppress it for a while and then it will kill me, my native healing powers are irrelevant, diet and emotional circumstances incidental. My future is already transcribed. All part of the operation of a big machine.
These last six years living at the periphery of the machine, the reactions to encounters with its assorted assemblages of components, their (dys)functionalities and idiosyncrasies, the rules to which they appeal and the procedures they actually follow, and so forth, have been a living deconstruction of any mechanical march towards the abyss; sometimes it has seemed to have slowed down, once or twice, completely held at bay, and maybe even ever so slightly turned back upon itself. The net result has nevertheless been a progression – of sorts – of the disease. I am now reaching another point of acceptance. Although I do not mean by this any kind of fatalism, or any kind of submission to the inevitable, rather a continuing commitment to living to the full while recognising the limits set at any moment, by both the disease and the circumstances of life, now with a greater degree of serenity, an understanding of what has been blocking this condition for so many years, and the levelling of my experience as cancer patient to the mundane, ordinary and familiar.
My previous normality has been thoroughly shaken up. I knew it was coming; in fact, I chose to pick up that box at that particular moment knowing that it was going to hurt. Perhaps others would say this was an act of recklessness that I would have been better to avoid, that might have gone even more badly wrong than it did – although? Seriously …. more intense pain than this I cannot fathom: my own personal pain scale has now changed, the usual 1 to 10 scale offered during triage, which reaches the peak of experience in my life with 12 or 13 and root canal infection has been split; 1 to 10 on the old linear scale now takes 1 to 5 on the new, and 5 to 10 on the new incorporates an exponential rise to any very large number it is possible to scream at the moment of asking above the chaos of triage.
From within, it is easier to see any putative recklessness as part of the mysterious, and very often only after the fact discernible to consciousness, movements of the many natural healing powers, mysterious combinations of deep forces and retrospective common sense about which it has been my responsibility to learn during this life. Continually now, not repeated simply as habits, blind and unreflective, formed from within my mother’s immaculate – if sometimes overwhelming – attendance, and care over her first born. Rather powers, which in the present context have a much more limited scope: to become familiar again only with what this body can do, and then gradually just as I have been doing all my life, to learn where I can take this life to get the most intense experiences of this beautiful fucked-up world.
We all live inside a veritable plethora of stories, from which we consolidate, direct and augment our experiences, becoming thus able to share our lives with each other. Even before any of us ever experiences anything at all, we have always already heard about what it might be like. Despite this, history is not only a sea of different perspectives on what happened, over which powers fight to have their version assertively expressed to the exclusion of others, but remains always a terrain of events taking place in actual reality, a domain of cause and effect, of consequences and further causes producing more consequences, becoming entangled together in effects that are far too complex for individual minds to grasp, too irregular and chaotic adequately to be closed down into systems, and always indifferent to the stories we hear about what may or may not be going on.
At the technical, mechanistic, face of advanced cancer therapy, they do their very best to find a balance. And I feel as if I am participating at last, with everything that can be done to help me live longer in comfort, in good company and with increasing stocks of joy, wonder and love.
During the history of medicine there is a tension that has informed research, guided the course that knowledge has taken and steered the way things are talked about: physiologists would really like to know about how particular diseases or conditions progress in the natural state; clinicians on the other hand want to find something that works now, both to alleviate immediate suffering as well as to address possible underlying causes. This is a complex balance. In my own transition to the core of medical expertise, the first, most obvious and reassuring discovery is that the agency talked of by mother is here. The doctors rely on it as much as I have to guide decisions about individual cases.
Every patient responds in a different way to the array of medication and treatment available for each condition. These are the effects of the ordinary individual natural healing powers that lie at the basis of everything, these energies and forces that will keep me alive and make me better, even if when I think I am ill already, I learn instead to understand what they are telling me about health, and to give me the determination never to succumb, whether under a sturdy geodesic frame, high in the wilderness stretched under technical textiles, pitched between mountains in the midst of unexpected weather, or on the plateau of a summer summit spanning the infinite colours of night, or in a hospital bed after an ambulance journey.
As we all lie or sit about in, or if we can, shuffle up and down the corridor of the ward, recuperating and dealing with whatever trials this disease has now just brought us, whatever new equilibrium we have entered, I am confident that despite the extreme circumstances of my arrival, I will be leaving in a state of relative autonomy, probably next week sometime, mindful of the full extent of my condition and the limits now being placed upon my life, preparing to face the world outside – where it is no longer everybody’s duty to care for my every need.
The experience of many others here is much worse than mine – particularly those enduring the effects of chemotherapy – and so as soon as I can get out to make way for somebody in greater need, I’ll be off. In the meantime, I have to master walking without falling over, balancing the pain medication with the other stuff and managing a catheter. There is plenty of room to read and rest, reflect and meditate, and write further about the incredible experience of health and vitality that has blossomed during these last six years of my life, even throughout the many very dark and difficult days for both myself and my nearest and dearest, even into this last crisis, through which I genuinely could not for a while see any way out, but by laying down, succumbing to the inevitable.
And now, absolutely reassured that the I am in good medical hands without in any way compromising the principles of health I learned from my mother. Again I can say, as I have said often before, for many other reasons, I feel today that cancer was probably the best thing ever to happen to me.
Love and peace 🙂