Having cancer is an education, and this is what I have learned

Illness introduced me to a beautiful network of dependence – and a struggle for autonomy I can't win on my own

• 
• • Mike Marqusee
  • guardian.co.uk, Tuesday 26 July 2011 22.00 BST
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The discipline of nursing converts science into care. Photograph: Bert Hardy/Getty Images
Now entering my fifth year of living with multiple myeloma, a haematological cancer, I reflect back on a roller-coaster ride of symptoms, treatments and side effects. Whatever else this experience has been, it's been an education. But what exactly have I learned? To begin with, that any glib answer to the question misses the core of the experience – the complex dialectic of being ill, which is a social as well as physical condition. For me the experience has led to a heightened awareness of both our intricate dependence on others and our deep-seated need for independence. Sitting with my IV drip, I like to think about all the human labour and ingenuity that come together in this medical moment. I could dedicate the rest of my life to this exercise and still not complete the inventory. The first circle of dependence is immediate and sometimes intimate. Partners, friends, doctors, nurses, cleaners, porters. Beyond them is a vast network of people I never see: pathologists, pharmacists, IT engineers, appointments managers. Everyone who has anything to do with maintaining the supply of medications or the functioning of equipment or getting me to and from hospital. Everyone who makes sure the lights are on and the building safe. The whole intricate ballet that is a functioning hospital. One misstep, and the whole breaks down, with potentially dire consequences. Beyond that, I'm dependent on a long history of scientific development to which individuals and institutions in many countries have contributed. From the British chemist Bence Jones identifying the protein associated with multiple myeloma in the 1840s to the pathologist and one-time film star Justine Wanger developing the IV drip in the 1930s; from the first experiments with chemotherapy (a byproduct of chemical warfare) in the 1940s, through the protracted struggle to master the art of toxicity (a dialectic of creation and destruction, if there ever was one), to the discovery of proteasome inhibitors in the 1990s and the creation of new "targeted therapies", like the one I'm currently receiving. Without innumerable advances in immunology, biochemistry, chemical engineering, statistics and metallurgy, to name but a few, I wouldn't be where I am now – in fact I wouldn't be at all. The drip flowing into my vein is drawn from a river with innumerable tributaries. It is an entirely rational, intelligible process but no less miraculous for that. And it's not just a story of science. Alongside that – and necessary to it – is the long history of the hospital, of the discipline of nursing, of the social developments that made it possible to convert raw science into practical care. I'm acutely conscious of how dependent I am on those who built and sustained the NHS – including, pre-eminently, generations of labour movement activists and socialists. And as I sit with my IV drip, I'm mindful of those in government and business who would smash the delicate mechanism of the hospital and shatter the network of dependence that sustains me. I'm being kept alive by the contributions of so many currents of human labour, thought, struggle, desire, imagination. By the whole Enlightenment tradition, but not only that: by older traditions of care, solidarity, mutuality, of respect for human life and compassion for human suffering. The harnessing of science, technology and advanced forms of organisation and information to compassionate ends is by no means automatic. It leans on and is only made possible by the conflict-riddled history of ethical and political development. Beautiful as it is, this network of dependence is also frightening. Restrictions in capacity and mobility are hugely frustrating, and relying on others to supplement them is not a straightforward business – for patient or carer. I often feel I'm engaged in a never-ending battle for autonomy. I fight it out in relation to institutions, experts, medications, means of mobility, forms of diet. Not to mention the vital effort to live a life beyond illness, to hold on to that kernel of freedom that makes you who you are. Paradoxically the struggle for autonomy is one you can't win on your own. You need allies, and part of being a carer is being an ally, not a nursemaid or controller. Independence is the stuff of life. But you can achieve it only through dependence on others, past and present. That's a truth driven home to the cancer patient but applicable to all of us. Illness is not an ideology-free zone. Certainly not for the government, which aims to divide sufferers into acute cases deserving of support, and less acute ones that must be forced back into the labour market, where our only function will be to undercut wages. This is one reason why resistance to the attacks on benefits for the disabled ought to be a central plank of the anti-cuts movement. The crisis facing the ill is an extreme form of the crisis facing the majority of the populace. We don't want charity – the form of dependence that makes independence impossible – but rights, and the resources to exercise those rights. Speaking for myself, taking part in anti-cuts activity is some of the best therapy available, an unashamed acknowledgement of social dependence and at the same time a declaration of political-spiritual independence.

Why are we afraid of male sexuality?

We may have gone a long way towards liberating women, but male desire is increasingly seen as a problem

• 
• • Ally Fogg
  • guardian.co.uk, Monday 18 July 2011 12.30 BST
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While older women are now widely eroticised, male equivalents such as John Major are attacked as 'old lechers'. Photograph: Martin Godwin for the Guardian
Is there anything good to be said about male sexuality? That might seem a daft question. Apparently it brings a lot of pleasure and excitement to the lives of men and women alike, it's inspired some of the greatest art, music and literature through the ages and has played a fairly substantial role in sustaining our species and populating the planet. Nonetheless you'll need to search very, very hard to find any positive appraisal of male heterosexuality. Since the era of the permissive society and the mainstreaming of modern feminism, western society has gone a long way towards liberating women's sexuality. Younger women have, to an unprecedented extent, been encouraged to believe they can be as sexual as they like and to experience and express their desires as they wish. Even the age-old proscriptions on female promiscuity have been largely broken down, exemplified by the glorious flowering of the SlutWalk movement. Simultaneously, and perhaps not coincidentally, male sexuality has been increasingly seen as a problem. You can hear it in the gentle, dismissive mockery that says men are simple creatures who "only want one thing" or, at the extreme, outright vilification. The male gaze threatens, male desire is aggressive. Our primal instincts are pathologised with the jargon of gender studies. Righteous and necessary efforts to reduce sexual crimes have had the unwelcome effect of teaching generations of men that our sexuality can be dangerous and frightening. Don't believe me? Look back at the Bailey review into the early sexualisation of children, and the surrounding media hoo-ha. Leaving aside any concerns about the veracity and accuracy of the report itself (and I have plenty myself) it is striking that acres of print were devoted to the impacts of these social trends on girls, their self-esteem and body image; their developing sexuality; their safety and security. Barely a word was spoken about boys, beyond fears that they are being turned into beasts. Again and again the message came out: girls have problems. Boys are problems. And yet does anyone doubt that there should be concerns about how easy access to porn impacts upon boys' sexual development, their self-esteem, their body image or performance anxieties? It's not as if young men bask in perfect mental health and happiness – young men commit suicide at nearly four times the rate of young women, and sex and relationships rank high on their list of concerns. At the other end of the age range, sexually active older women are now widely eroticised (albeit often with a rather misogynistic undertone) as "cougars" or (forgive me) "Milfs" while their male equivalents are disparaged as dirty old men. Observer columnist Viv Groskop recently went further, opining about any older man who has sex outside marriage, even the mild-mannered old janitor John Major, saying "Unfortunately it's not against the law to be an old lecher. Maybe it should be. Or at the very least you shouldn't be rewarded with the highest office in the land." Perhaps the greatest concern for men and women alike should be the way male sexuality and sexual expressiveness balances on a narrow tightrope of acceptability. One step off the wire and you tumble into the realm of perversion. As feminist blogger Clarisse Thorn noted last year, any man who hits on a woman and gets it wrong risks being branded a "creep" – sometimes deservedly so, of course, but often for no greater sin than being insufficiently attractive or socially skilled, or having misread a perceived signal of invitation. I've never heard of a woman being stigmatised or disparaged for expressing an attraction to big men, rough men, geeky men or whatever. A man who expresses similar desires for women who don't conform to standard norms of beauty is a perv, a fetishist, a weirdo. All of these prejudices are rehearsed and reiterated by men and women alike, they reside in the intangible web of social norms, conventions and culture, but they can and must be challenged and changed. If we can begin to openly and joyously celebrate the positives to male sexuality, it might become easier for men to be happy and confident sexual partners, and in turn become better lovers, and sometimes better people. Male sexuality is no less diverse, complex and wonderful than women's or, for that matter, no more base, coarse and animalistic. Sure, most men might be slightly more likely to let our gaze linger on eye-catching curves, and slightly less likely to giggle about our lovers' proclivities with our friends, but in the grand picture women and men are surprisingly similar, in this respect as in so many others. Women have been entirely justified in asking that we blokes respect their rights, autonomy and wishes, that we respect them as sexual beings. It shouldn't be too much to ask for a little of the same in return.

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Desire: A dangerous flame

We think of it as an irresistible force – yet we are so in thrall to it that we have ceased to respect it. Jeanette Winterson looks at the power of desire

Thursday, 18 September 2008

Why is the measure of love loss? In between those two words – love, loss, and standing on either side of them, is how all this happened in the first place. Another word: desire.

While I can't have you, I long for you. I am the kind of person who would miss a train or a plane to meet you for coffee. I'd take a taxi across town to see you for 10 minutes. I'd wait outside all night if I thought you would open the door in the morning. If you call me and say "Will you..." my answer is "Yes", before your sentence is out. I spin worlds where we could be together. I dream you. For me, imagination and desire are very close.

Desire is always a kind of invention. By which I mean that the two of us are re-invented by this powerful emotion. Well, sometimes it is the two of us, sometimes it might just be me, and then I am your stalker, your psychopath, the one whose fantasy is out of control.

Desiring someone who has no desire for you is a clue to the nature of this all-consuming feeling; it has much more to do with me than it has to do with you. You are the object of my desire. I am the subject. I am the I.

When we are the object of each other's desire it is easy to see nothing negative in this glorious state. We become icons of romance, we fulfil all the slush-fantasies. This is how it is meant to be. You walked into the room... Our eyes met... From the first moment... and so on.

It is safe to say that overwhelming desire for another person involves a good deal of projection. I don't believe in love at first sight, but I do believe in desire at first sight. Sometimes it is as simple as sexual desire, and perhaps men are more straightforward there, but usually desire is complex; a constellation of wants and needs, hopes and dreams, a whole universe of uninhabited stars looking for life.

And nothing feels more like life than desire. Everyone knows it; the surge in the blood, cocaine-highs without the white powder. Desire is shamanistic, trance-like, ecstatic. When people say, as they often do, "I'd love to fall in love again – that first month, six months, year...", they are not talking about love at all – it's desire they mean.

And who can blame us? Desiring you allows me to feel intensely, makes my body alert as a fox. Desire for you allows me to live outside normal time, conjures me into a conversation with my soul when I never thought I had one, tricks me into behaving better than I ever did, like someone else, someone good.

Desire for you fills my mind and thus becomes a space-clearing exercise. In this jumbled, packed, bloated, noisy world, you become my point of meditation. I think of you and little else, and so I realise how absurd and wasteful are most of the things that I do. Body, mind, effort, are concentrated in your image. The fragmented state of ordinary life at last becomes coherent. No longer scattered through time and space, I am collected in one place, and that place is you.

Simple. Perfect.

Until it goes wrong.

The truth is that unless desire is transformed into love, desire fails us; it fails to do what it once did; the highs, the thrills. Our transports of delight disappear. We stop walking on air. We find ourselves back on the commuter train and on our own two feet. Language gives it away; we talk about coming back down to earth.

For many people, this is a huge disappointment. When desire is gone, so is love, and so is the relationship. I doubt, though, that love is so easy to shift. Loving shies away from leaving, and can cope with the slow understanding that the beloved is not Superman or Miss World.

We live in an "upgrade" culture. I think this has infected relationships. Why keep last year's model when the new one will be sleeker and more fun? People, like stuff, are throwaways in our society; we don't do job security and we don't offer security in relationships. We mouth platitudes about time to move on, as though we were doing something new-age and wise, when all we really want is to get rid of the girlfriend/boyfriend/husband/wife.

I don't want a return to the 1950s, when couples stayed together whatever the hell, but whoever said that relationships are easy?

Advertising always promises that the new model will be easier to use. And of course when you "upgrade" to the next relationship, it is also easier – for a while.

If you are pretty or personable, handsome or rich, serial relationships offer all the desire and none of the commitment. As sexual desire calms, and as the early fantasies dissolve, we begin to see the other person in real life, and not as our goddess or rescuer. We turn critical. We have doubts.

We begin to see ourselves, too, and as most of us spend our entire lives hiding from any confrontation with the self, this sudden sighting is unpleasant, and we blame the other person for our panicky wish to bolt. It is less painful to change your partner than it is to confront yourself, but one of the many strange things about love is that it asks that we do confront ourselves, while giving us the strength of character to make that difficult task possible. If desire is a magic potion, with instant effect (see Tristan and Isolde), then love is a miracle whose effects become apparent only in time. Love is the long-haul. Desire is now.

An upgrade culture, a now culture, and a celebrity culture, where the endless partner-swapping of the rich and famous is staple fare, doesn't give much heft to the long-haul. We are the new Don Giovannis, whose seductions need to be faster and more frequent, and we hide these crimes of the heart under the sexy headline of "desire".

Don Giovanni – with his celebrated 1,003 women, is of course dragged off to Hell for his sins. Desire has never been a favourite of religion. Buddhism teaches non-attachment, Christianity sees desire as the road to the sins of the flesh and as a distraction from God. Islam has its women cover themselves in public lest any man should be inflamed, and jeopardise his soul. In Jewish tradition, desire ruins King David and Samson, just as surely as modern-day Delilah's are still shearing their men into submission. Yet it would be misleading to forget the love poem in the Bible that is the "Song of Solomon"; a poem as romantic as any written since, that gives desire a legitimate place in the palace of love.

And quite right too. Desire is wonderful. Magic potions are sometimes exactly what is needed. You can love me and leave me if you like, and anybody under 30 should do quite a lot of loving and leaving. I don't mean that desire belongs to youth – certainly it does not – but there are good reasons to fall in love often when you are growing up, even if only to discover that it wasn't love at all.

The problems start when desire is no longer about discovery, but just a cheap way of avoiding love.

It is a mistake to see desire as an end in itself. Lust is an end in itself, and if that is all you want, then fine. Desire is trickier, because I suspect that its real role is towards love, not an excuse in the other direction.

There is a science-based argument that understands desire as a move towards love, but a love that is necessary for a stable society. Love is a way of making people stay together, desire is a way of making people love each other, goes the argument. This theory reads our highest emotional value as species protection. Unsurprisingly, I detest this reading, and much prefer what poets have to say. When Dante talks about the love that moves the sun and the lesser stars, I believe him. He didn't know as much as we do about the arrangement of the heavens, but he knew about the complexity of the heart.

My feeling is that love led by desire, desire deepening into love, is much more than selfish gene-led social stability and survival of the species. Loving someone is the closest we can get to knowing what it is like to be another person. Love blasts through our habitual sclerotic selfishness, the narrow "me first" that gradually closes us down, the dead-end of the loveless life.

There are different kinds of love, and not all of them are prefaced by desire, yet desire keeps its potent place in our affections. Its releasing force has no regard for conventions of any kind, and it crosses genders, age, social classes, religion, common sense and good manners with seemingly equal ease.

This is bracing and necessary. It is addictive. Like all powerful substances, desire needs careful handling, which by its nature is almost impossible to do.

Almost, but not quite. Jung, drawing on alchemy, talked about desire as the white bird, which should always be followed when it appears, but not always brought down to earth. Simply, we cannot always act on our desire, nor should we, but repressing it tells us nothing. Following the white bird is a courageous way of acknowledging that something explosive is happening. Perhaps that will blow up our entire world, or perhaps it will detonate a secret chamber in the heart. For certain, things will change.

I don't suppose that the white bird of desire is nearly as attractive to most of us as the white powder substitute with natural highs. Desire as a drug is racier than desire as a messenger. Yet most things in life have a prosaic meaning and a poetic meaning, and there are times when only poetry will answer.

For me, when I have trusted my desire, whether or not I have acted on it, life has become much more difficult, but strangely more illuminated. When I have not trusted my desire, out of cowardice or common sense, slowly I have gone into shadow. I cannot explain this, but I find it to be true.

Desire deserves respect. It is worth the chaos. But it is not love, and only love is worth everything.