“Surviving”

For a long time I was perplexed by the phenomenon of “survivor’s guilt”. While I recognised it as a reality, a terrible affliction, and I could see its logic, to me that logic seemed perverse and alien. I couldn’t get inside it.

Now five years after being diagnosed with multiple myeloma (cancer of the bone marrow), I find myself, against the odds, enjoying a period of remission. And with it a more intimate understanding of “survivor’s guilt”, at least as it applies to cancer survivors.

When you’re first diagnosed with cancer, especially an ‘inexplicable’ one like mutiple myeloma (cause unknown), you think: why me? What have I done to be singled out for this suffering, for an early and arbitrary death? Then when you survive, you think: why me? What have I done to be spared this suffering, to be granted a stay of execution, denied to others who happen to fall on the wrong side of the statistical median? What burdens does survival place on me? How can I prove worthy of this reprieve? How ought I to use this extra time?

Surviving, it turns out, is a complicated business. There are priceless opportunities but also challenges. To what end do I survive? How do I choose my priorities?

For me “remission” is yet another phase in a long illness, another phase bound to come to an end. The illness is in abeyance, but hovering over my shoulder, waiting its moment of return, a spectre at the feast, out of sight but never entirely out of mind. We all survive only provisionally, but in my case the provisional is less of an abstraction. I’m reminded of that every time my blood is tested or a I feel a twinge in my vulnerable skeleton.

In these circumstances, the old nostrum about seeing the glass as “half empty” or “half full” is not only useless but invidious. As if it’s merely an act of will to see it half full, and a failure of will to see it half empty. As if there were virtue in describing want as satisfaction. Like much “advice” cancer patients receive, it’s a way of telling us not to complain, not to disturb others with our discomforts or fears. At all cost we must be spared the Dark Side. It’s not even a question of trying to see the same glass as simultaneously half full and half empty – because at any moment those may well not be the proportions, and much depends on what the glass is half full with and what it’s missing. Reducing one to a function of the other misrepresents the nature of both.

An encounter with one’s mortality is supposed to “put things in perspective” or teach us a lesson in “proportion”. To some extent it has done that for me, but it doesn’t annul the frustrations of daily life or magic away minor irritations or petty resentments. And it certainly doesn’t suddenly tame all those drives, compulsions, desires seated deep inside us. They know little of “proportion”. The injunction to “rise above” grievances becomes, in the end, yet another burden, an artificial imposition, an exercise in denial.

The same can be said of the common-place about “living every moment to the full”. Yes, it’s a good idea while you can to seize the day, to savour life’s beauties, and generally to make the most of what falls in your way. But in the end these are platitudes that answer none of the real questions posed to “survivors”.

Leaving aside the difficulty of “living every moment to the full” if you’re struggling with weakness, side-effects, immobility or poverty, it is an impossible ambition in any case: a vanishing horizon, a desire that can never be satiated, and after a while just another source of anxiety. “What’s wrong with me? I’m not getting the most out of every moment!”

The echoes of the prevailing neo-liberal form of capitalist ideology are deafening. The perpetual injunction to enjoy, to consume, to celebrate. The post modern conception of moments as merely multitudinous, one as good as another as long as you “live it to the full”. The idea that nothing is real that cannot be assimilated to the pleasure principle, to the satisfactions of a perpetual present. It’s a variant on the core message of corporate advertising, with its inducements to repetition compulsion and fetishistic behaviour, its equation of the act of consumption with the acquisition of happiness, its generation of a world where “needs” remain forever stimulated, forever unsatisfied.

The only way to “live every moment to the full” is to live for a purpose beyond the moment. Otherwise you’re left with a succession of unrelated moments. There’s no past or future. The present is no longer the critical junction between the two, the place where one is transformed into the other, where choices are made.

We can never live entirely in the moment because we carry with us an accumulated past, both personal and social, coded in our psyches, working away in darkness. Denying that reality in the name of “the moment” merely enhances its power over us. Conversely, denying the link between “the moment” and the future, between the immediate and the realm beyond it, is to render the moment impotent and literally inconsequential.

When William Blake spoke of seeing “a world in a grain of sand, and heaven in a wild flower”, holding “infinity in the palm of your hand, and eternity in an hour,” what he had in mind was something radically different from the contemporary gloss on “living each moment to the full”.

Every Time less than a pulsation of the artery
Is equal in its period & value to Six Thousand Years.
For in this Period the Poets Work is Done: and all the Great
Events of Time start forth & are concievd in such a Period
Within a Moment: a Pulsation of the Artery.

For Blake, “moments” are constructed, acts of the imagination, “wondrous buildings”. And crucially they are built – can only be built – in defiance of the established order and its ideology. In Blake’s terms, in defiance of “Satan, the god of this world” and his agents:

There is a Moment in each Day that Satan cannot find
Nor can his Watch Fiends find it, but the Industrious find
This Moment & it multiply. & when it once is found
It renovates every Moment of the Day if rightly placed

The context here is an era of political repression, of spies and informers, and of ideological orthodoxy. “Satan and his watch fiends” inveigle their way into our inner lives, using our own powers against us, chaining us to the social order and blinding us to its artificial foundations. For Blake, the “moment” is the moment (of whatever duration) in which we break loose from these “mind-forg’d manacles”. It has transformative power. It is not a place of rest, an end-point, but a new beginning, an opening, which must be multiplied and “rightly placed”.

To get to this kind of moment, to grasp the possibilities latent in a reality that exceeds our grasp, requires a kind of inner revolution, a dismantling of habit, convention, precedent, an overcoming of the myriad forms of self-deception and social opacity. It means in the end overthrowing the existing order, the prevailing hierarchies, of which we are all products and which we are all programmed (but not condemned) to reproduce.

Living with a purpose is not the same as living according to a plan. On the contrary, it entails facing up to the unresolved character of reality: the contingencies on which our lives hinge. My experience of mortal illness has certainly deepened my sense that life is astonishingly super-abundant, protean, overflowing all our categories, baffling all attempts to grasp it as a whole. That’s why, if you take it seriously, as neither a license nor an encumbrance, “living each moment to the full” must be a daunting, painful, labour-intensive task. It’s a work of exploration, not passive reception. As such it carries risk. The “moment” is not a comfort zone, an island sealed off from peril, from challenge, but a point of intersection and potential connection. It’s about breaking out of a confining circle, not reposing safely inside it.

Inevitably, for me, “surviving” has a political dimension. My illness has coincided with the unfolding of the latest crisis of capitalism, whose effects on the NHS I see in uncomfortable close up. I’m alive now not simply because of scientific advances, but because of the application of those advances to human welfare – made possible by the NHS. In the US, the life-extending treatments I’ve received would have been financially devastating or simply beyond our means. Handbooks for multiple myeloma sufferers published in the US are preoccupied with how to finance and access the best possible treatment, matters which have little bearing on their counterparts in Britain. Here we are, for the moment, spared not only the financial costs but the accompanying burden in anxiety, frustration and time-consuming, energy-sapping bureaucracy.

All of which means that cancer patients face an unavoidably political struggle, a struggle against the ideology of market imperatives. So precious is the NHS, as a historical high watermark, and a pointer to a better future, that resistance to its dismemberment must be a priority of this moment. If we’re to lose the NHS as we’ve known it, if we’re to go down, I want us to go down fighting. That’s the best way to “live the moment” – defending the future in the present.

But as Blake reminds us “living the moment” also requires an act of separation. Although it may sound odd in the midst of an article articulating a personal experience, privacy is something I’ve come to cherish and nurture much more consciously than in the past. There’s little dignity in laying open your wounds to the world, although it’s idle to pretend that you’re not wounded. In either case, my aim is to keep Satan’s Watch-fiends at bay, which doesn’t mean disconnecting from the world but from their view of the world. Strangely, in my protected private world I feel more connected than ever to the great world outside, the world in flux, the world of which I remain a part, even in my bolt-hole. The internet is in this respect is a boon, as it is for anyone suffering confinement. Though for my part I still discover more new things – things new to me – between the covers of printed books, including in texts published centuries ago.

I know that it’s often supposed that the closeness of mortality makes people more benign, more disposed to love. But once again, I guess I fail the test. My hatred of the exploiters and their apologists is sharper and fiercer than ever. The rule of global capital has never seemed more naked, its casual brutality and hubristic tyranny more exposed, carrying its denial of human interdependence to sociopathic lengths in the corporate disregard for climate change. In this context, anger against injustice is not to be diluted in “the moment” or suppressed because the glass is “half full”.

While in itself the “survivor’s” situation provides no clarity, it certainly makes you seek clarity, of one kind or another. But if there is some point of rest in life’s journey, a plane of resolution, an end to doubt and inquiry, I haven’t reached it and I’m not sure I want to reach it. As long as I’m going, I’ll be looking to make discoveries: a poet or a musical genre or a twist in the tail of a Test match, new waves of resistance, new political opportunities, new horizons of thought and feeling.

Though I reserve my rights to complain and to be angry, I do feel lucky in some respects. Principally in the support of those closest to me. But also in that reading and writing have always been central to me and despite my illness I can keep practising and even improving both skills. Others I know have lost not only their mode of employment but often the chance to engage in the activities that give meaning to their lives. Or is that just me looking at the glass half-full?