The bedrock of autonomy

A life beyond illness rests on a delicate and complex web, writes Mike Marqusee
August 2011

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 brought, 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 sometimes murky dialectic of being ill, which is a social as well as physical condition.

For me, the experience has led to a heightened awareness of our intricate dependence on others, as well as 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. The inventory is endless.

The first circle of dependence is immediate and sometimes intimate. Partners, friends, doctors, nurses, cleaners, porters. I’m also dependent on a vast network of people I never see: pathologists, pharmacists, IT engineers, equipment repairers and supplies 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, one breach in the rhythm, one failure to be at the appointed spot at the appointed time, 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 Irish physician Francis Rynd, who invented the hollow needle in the mid-19th century, to Don Thomas of the University of Washington who pioneered bone marrow transplants in the 1980s. From the first experiments with chemotherapy (a by-product 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 subsequent creation of new ‘targeted therapies’, like the one I’m currently receiving.

Without innumerable essential advances in immunology, pathology, 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 story of scientific advance is also, of course, a story of errors, false hopes, cynical exploitation and misappropriated resources. We’ve come a long way from the 2nd century AD when Galen, doyen of Roman medicine, declared that cancer was caused by melancholia; or from the treatment – rhubarb and orange peel – given to the first patients diagnosed with myeloma in the 1840s. Even as recently as the 1950s myeloma patients were given a standard urethane therapy that was later shown to be completely ineffective.

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.

Not just hard science

And it’s not just a story of hard science. Alongside that, and necessary to it, is the whole history of the hospital (which for many generations was primarily a place you went to die, not to be cured), of the discipline of nursing, and of a host of 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. (Among other things, the disassembling of the NHS runs counter to the thrust of advanced thinking on patient-centred care, which stresses a multi-disciplinary and integrated approach.)

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 other, 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. As a cancer patient I often feel I’m engaged in a never-ending battle for autonomy. I fight it out in relation to institutions (including hospitals), experts (who claim to know more about my situation than I do), medications (an endless struggle to find an elusive balance), 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.

Struggle for autonomy

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, a comrade, not a nursemaid or controller. Independence is the stuff of life. It’s motion, energy, free will, the capacity for self-development. But you can achieve it only through dependence on others, individuals and institutions, past and present. That’s a truth driven home to the cancer patient, but applicable to all of us. As is the realisation that the most rewarding use of the independence thus secured is in the service of a creative and compassionate engagement with others, building higher dependencies – new networks of mutuality.

Illness is anything but 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 out into the labour market, where our only function will be to undercut wages and job security. This is one among many reasons why resistance to the attacks on benefits for people with disabilities and long-term illnesses ought to be a central plank of the anti‑cuts movement.

The crisis facing the disabled and the ill is an extreme form of the crisis facing all those dependent on the public sector in whatever manner (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 acknowledgment of social dependence and at the same time a declaration of political-spiritual independence.

Being ill makes salient some critical features of the underlying human condition, not least the dialectic of dependence and independence. Even in the most despairing moments, the utmost dependency, the politics of illness turns out (for me) to be a politics of struggle and hope, the harbinger of a solidarity flowering out of our common but always idiosyncratic weaknesses. n

Contending for the Living is Mike Marqusee’s regular column for Red Pepper. www.mikemarqusee.com



Mike MarquseeMike Marqusee 1953–2015, wrote a regular column for Red Pepper, 'Contending for the Living', and authored a number of books on the politics of culture, on topics ranging from cricket to Bob Dylan.






Comments are now closed on this article.






Red Pepper · 44-48 Shepherdess Walk, London N1 7JP · +44 (0)20 7324 5068 · office[at]redpepper.org.uk
Advertise · Press · Donate
For subscriptions enquiries please email subs@redpepper.org.uk