It was bound to happen one day. That I would renounce my mother’s wisdom and embrace modern mechanistic medicine. I will always be able to convince myself that I have only ever claimed in moments of polemic and hyperbole that it does not actually work. My general position has been rather that the criteria it employs are reductive, its underlying metaphysic mechanistic, its view of itself hubristic, the languages it uses to explain and present itself patronising and incoherent, and that it has been hijacked by postmodern capital as a bit of a cash cow. By its own criteria it does work, of course it works, but other stuff works too: modern mechanistic medicine has become mixed together with the pernicious idea that it is the only kind of approach to health and disease that truly works, and by the adherence to which all disease can in principle be cured. All of which is mobilised by extremely complex assemblages of power, with long histories of intimate relations with the general processes of capitalism, production and society.
Even although my mother explained at the time that what she was telling me about health, diet and disease was unusual, I did not understand what this meant; it has taken me most of my life to realise that what I learned from her as a child is not only very different from what everybody else believes, but also extremely challenging. The process is by no means over; the consequences of having been brought up to believe these things about health run deep, the principles they express impact hard at the foundations of our societies, and the habits of conduct I have formed on this basis are nothing short of revolutionary; but although sometimes regarded as reprehensible, usually only by adherents, inadvertent or otherwise, of the inimitable Doctor Dawkins, or by doctrinaire social theorists and historians, more commonly they are seen these days as morally ambiguous or just plain eccentric. Nevertheless, even proponents of so called alternative approaches to health have been noted to regard my mother’s wisdom as a little bit out-there.
During the writing of this blog I have had the differences clarified, I am able now to outline quite precisely what is at issue. I have deliberately placed my life in the care of the natural intelligence of which my mother taught, trusted in my own healing powers, made a conscious effort at all times to keep myself active, well fed, healthy and free of toxins. Not that I have always succeeded, but this has been my motivation and was the origin of my awareness of myself, the source of what would in today’s language be called mindfulness; it has also become now a kind of joyful scientific journey during which I offer the effects of the disease on my body as data, evidence to anybody who might want to see it of something less denatured than the normal course of events, events that are more commonly reduced to statistics, pumped though software and subjected to normative evaluations.
The essential element of my mother’s knowledge is a belief in agency; a personal commitment to look after myself, as much as a belief that this is not just something that I can do, but a power inherent in all life; a determination actively to be alive as much as a metaphysical commitment to such an idea in general. Were it not for this agency, I would neither be able to climb mountains nor write this blog, Yet whenever I have (been) confronted (by) the edifice of medical science, this is precisely what is always already absent, for which there is no space. From the first moments of the diagnostic process I have been offered a choice; either I erase my agency in a mechanistic wilderness of process and protocol, whilst reducing my understanding of the disease to quiet contemplation of the knowledge I glean from encounters with medical science, either that, or I walk away. The very fact that I experienced this as a choice at all, that I did not without question accede to medical advice without any sign of having done so, this already threatened the smooth running of the system, created a ripple in the matrix, and turned me into a difficult patient.
The mechanism of medical science inheres certainly in the Cartesian metaphysics that underpins (post)modernism, and in the complex hierarchy of methodologies employed in the production of evidence, but more insistently in the protocols and procedures of systems of health care. Its reductionism is equally underpinned by Descartes’ treatment of atomism and necessitated by the step-by-step protocols of triage and diagnosis, but crucially it is reproduced by big Pharma’s voracious appetite for identifying, replicating, patenting and mass producing single compounds so these can be sold at great profit in cocktails as the only substances with value as legitimate medicines. Within all health systems, all items, substances, preparations, encounters between patients and medical staff, bed spaces, time allotted to diagnostic and treatment technologies, ambulance journeys, and so forth; all have to be planned, time-managed, administered, communicated and mobilised, made to operate as efficiently as possible, and of course accounted and invoiced. All of which presents logistical and strategic challenges of some complexity that absolutely require every component element to be reduced to a most essential form.
Most of the elements of the medical creed (described here) are a consequence of these practices; it was perhaps slightly disingenuous to have referred to a creed at all, although in context it was appropriate, for it suggests that practices follow from ideas, whereas the complete opposite is much nearer the truth, that the unreflective habits of individuals form the basis of their beliefs – beliefs being simply habits of thought. What people do is much more instructive in this respect than what they say they believe, or hold to be true – except in so far as words are taken as deeds. It has been my experience that at the level of ideas it is perfectly possible to discuss stuff with the medical staff I meet, but their opinions are formed by the systems within which they work, and even if they were persuaded that it might be a good idea to look at the whole person rather than focus exclusively on quantitatively identifiable diseases, on the component parts of a person’s body, at a particular stage of disease progression, still they are compelled to offer only what the system allows – chemical medication, surgical intervention, focused radiotherapy, or whatever other approved therapies apply in particular cases.
At a pragmatic level, my issue with medical science arises simply in the exclusions created by all of the above, agency for example, or any curative preparation that is not a product of pharmacology, or deep breathing, meditation and mindfulness. And most crucially diet. The disconnection of nutrition from health that is perpetuated by modern health care systems seems to me utterly insane; whether this is another symptom of big pharma’s power remains an open question. At the level of simple common sense though, it remains a complete mystery to me as to why there are vending machines for crisps, sweets, fatty snacks and sugary drinks located within hospitals. Seriously?! Why is this possible at all? My experience is that anybody attempting to answer this question very quickly digs a very deep hole for themselves, within which further digging reveals even more profoundly just how fucked up are the societies we human beings have created for ourselves.
When I was I child my mother impressed upon me, without reserve, the importance of eating a good healthy diet, composed entirely of freshly produced vegetables, fruit, a little cheese and meat, wholemeal bread, but no sweets or canned drinks, except under supervision on special occasions. Milk, particularly anything pasteurised (denatured) was discouraged in favour a young buttermilk known as humus – not to be confused with the chick pea mush that goes so surprisingly well with so much. We ate salads a lot and I developed a taste for different mixtures of raw vegetables. Of course, because I was growing up in the real world, I ate a lot of unhealthy crappy stuff too, broke her dietary taboos, and also laid down the basis of what in later life could only be described as a minor eating disorder. Of course, I also pushed against her fierce morality with the same spirit of autonomy she was teaching me. From a very early age, every time I became ill, I was sent to bed with nothing but fresh fruit, pineapple juice and my thoughts. This is what I thought you did. I was never given medicine. And when I became very ill, particularly during my early twenties, just about the time I was feeling the pull of mountain journeys, I took myself to see a practitioner of the same variety my mother had been visiting since she was a girl.
My mother was the third surviving child of the heir to The Buttercup Dairy company – a chain of grocers which, during its heyday about 100 years ago, had branches in most towns in south and north east Scotland, as well as some in Northern England. Her father was the son of Jessie Ewing, sister of Andrew Ewing who had founded the Buttercup Dairy Company around the same time as his sister’s husband and close friend, William Robertson Spence opened a grocery shop in Dundee. When William died still only in his thirties, his eldest son John Spence continued the business, with the support of his uncle, who adopted him as his own. The two became lifelong friends and business partners, combining their interests and distributing shares throughout the rest of the siblings: John’s brother Willie who was killed over France in 1917, and Jessie, her daughter Etta, and her sister Annie who produced progeny who have mostly joined the diaspora of centuries. My mother was born after all production and administration of the Buttercup Dairy Company, by now a nationally recognised chain of grocers, was moved to Edinburgh, with premises all over the city, a warehouse with cold storage on Easter Road and a farm at Clermiston, where the Ewings lived surrounded by chicken sheds, veterinary facilities, dormitories and refectories for workers, and a chapel, on land from which my mother recalled witnessing the first dogfight of World War Two.
My mother was herself born on Lauder Road and grew up in a villa on Grange Road, she was educated in the borders from the outbreak of war and returned to St George’s at Ravelstone in 1946 to complete university qualification, which she entered in 1948 aged seventeen to read General History and the History of Art. I was born after my mother deliberately left this life behind, with my father, who she met as a student, to make a new life together in the usual arrangement for the nineteen fifties, after extremely tragic and traumatic circumstances further exacerbated the extremities of the Spences.
I grew up in the aftermath of all this, hearing stories of the various cousins and family relations my mother had left behind, what a great man her Great Uncle Andrew had been, and that she was happy no longer to have much contact with any of her dysfunctional family. Never why though; that came later as she brought me up and we grew to enjoy a healthy relationships; and before she died she told me a lot more stuff that she had hitherto not revealed, which I recorded carefully. We continued to know her father, my Grandfather until he died in 1972, of what at the time was described as blockage of the bowel, and which would seem likely in modern parlance to be called advanced prostate cancer.
There is a coffee table history of the Buttercup Dairy Company in print, and a few internet references, but the inside history has never really been written. Suffice it to say that the company was declared bankrupt not long before I was born at the end of the 1950s and business finally wound up during the 1970s. The reasons for this can be seen in the accounts, which are a matter of public record. The truth is that Andrew Ewing and John Spence amongst others, had always been in conflict with those who did not share their Christian commitment to treat workers properly, to offer a tithe of all production to charity, and to ensure that basic foods such as tea, sugar, flour, eggs, milk, butter, cheese and so forth, be distributed and made available, every day fresh and to as many people as possible, as cheaply as possible, and at reduced rates to hospitals and workhouses – all without disturbing the Sabbath.
This was the motivating power. My Great Great Uncle Andrew Ewing and my Grandfather, his nephew, John Spence wanted to feed people. They did not want to do this in order to become rich. Ironically though in doing so, they did become rather comfortably off, which led to further conflicts when, as controlling directors of the company, they declared it would make no great dent in profits that in addition to the general tithe, all turnover from production on the Sabbath be donated to the Church, while all staff would continue to be paid a good weekend rate. Pragmatically it could never be denied that every day chickens lay eggs, cows must be milked, and produce prepared for cold storage, which in a good summer lasted no more than an afternoon in the back of a van cooled with blocks of ice. The directors always invested in the latest technologies, adhered to proven techniques of cleanliness and hygiene, and introduced the most modern systems of warehousing and distribution. Sometimes it was felt by others in the organisation, by non shareholding family members and by non family shareholders that such decisions ate too far into general profits.
At the age of five, during complex economic times for all business, with assorted forces beyond anybody’s control – like mobilisations of European capital – creating dips in turnover, my mother developed ringworm. This was a condition known more commonly amongst the lower orders and which would have become an embarrassment to the Spence household, were it to be have been revealed in society. My grandmother, Mary Woodrow, who met John Spence at the congregation of Charlotte Chapel, was complex, charming and intelligent, but damaged, and obsessed with performing well in Edinburgh society. She quickly consulted the local family doctor who prescribed Thallium Acetate as a topical application, with the purpose of epilating and then treating her scalp of the fungal infection. Within several days my mother was bald, as expected, but also paralysed from the waist down, confined to a wheelchair, utterly dependent on a mother who despised her, a sister of 16 who resented her and a brother of 11 whose affections were boyish and uncontrollable. Within only a year, after a massive review paper of heavy metal toxicity in a Scandinavian Journal, Thallium Acetate was reclassified from medicine to poison, removed from all production processes.
Within weeks, Mary Woodrow had discovered the most fashionable and successful clinic within the circle of her friends. This further attracted her attention by having a somewhat polemical attitude to quackery, modern fads about reductive methods and unnatural ideas of health. My mother became an immediate patient of this clinic at the West End of the city, owned by the Thomson Family, who some years later established a much more extensive centre for natural health on the outskirts of the city at Liberton in Kingston House. This I knew as a child; my mother continued throughout her life to visit this place in times of crisis, as did I, until it closed, during the nineteen eighties, in a time of crisis.
My mother’s paralysis took nearly a year to clear, her hair grew back more quickly. The treatment was what might loosely be described as detoxification; but not in any modern sense involving compressed plant juice, glossy brochures, special potions and marketing gobbledygook. This was more a matter of slowly encouraging healing powers to do their thing, a broad diet of natural cleansing foods and gradual manipulation. Not long before he died, the last surviving member of the original Kingston practice, Sandy Milne, told my mother that her entire life had been a variety of detoxification, the natural result of her exposure to so much toxic Thallium Acetate at such a vulnerable age. (He also told her that at the winding down of the clinic at Kingston, her notes had been among those submitted as of exceptional interest to the Royal College of Physicians of Edinburgh for permanent archive. Despite several requests, I have not been able to confirm if these were ever received in good order.) Upon her return from the clinic, my grandfather obviously recognising my mother’s considerable sensitivity and substantial intellect, aware of the many family dysfunctionalities that were affecting her, arranged for her henceforth to be cared for by a nanny, who continued to look after her as war broke out and as her school was evacuated to Galashiels, throughout the war and then afterwards until she left St George’s for the University.
It is not exactly surprising that my mother brought up her first born child to understand the value of food, the importance of the relationship of diet to health, of her own experience of healing, and to trust the natural powers of a body’s intelligence. My life has never been easy because of how, as a consequence of my mother’s knowledge, I have lived my life. Quite literally, I speak a different language about health, disease and getting better from almost everybody else I know. But there comes a time when pragmatism takes over from principle. When decisions must be based on visceral experience.
Last Tuesday that day arrived.
After the apparent false alarm of a couple of weeks ago, everything was going well. I could feel improvement. My mobility was returning. I could bend over to pick stuff up. I followed the advice offered, to keep doing what I am doing, to move as much as I could. It was an ordinary day delivering stuff. At about lunch time I picked up a box badly and immediately I was crippled by a searing pain across my pelvis and in my spine just above the joint between the two. Miraculously, I made one more delivery, drove back to the shop, and declared that I needed to be taken to hospital, before then trying desperately to find a position where the pain was at least manageable, as I gave out information to people on the phone to assorted medical agencies and services. My lovely wife came to make sure I would be taken to the right place, my brother turned up to hold me upright, my wonderful colleagues guided the ambulance, redirected traffic and made sure everybody got what they needed. It seemed to take ages for the ambulance to turn up; throughout the wait I kept myself conscious by knowing that soon I would be getting heavy painkillers. When eventually, nearly 20mg of intravenous morphine was gradually introduced, I calmed down a bit, but the pain continued. Muscle relaxants stopped the spasms and I was eventually manipulated into a position from which I could be placed in the ambulance and driven off. My wife and brother followed. My colleagues went back to work. But the pain itself had hardly been touched and the ambulance staff preferred to get me into the hands of doctors before administering further medication.
At the hospital they were expecting me; I was immediately subjected to the full barrage of medical technology, catheterised, injected with or asked to swallow more medications than I can bring to mind; amongst which a continuously delivered subcutaneous morphine and muscle relaxant cocktail, assorted antibiotics, blood thinners, steroidal painkillers and anti-inflammatories, a new hormone treatment that they tell me will be more effective than the one that stopped working two years ago, and top-ups of morphine and muscle relaxants when required. I went from being medication free to a recumbent pharmacy in a matter of a few hours. I was visited by many doctors whose sole motivation was to manage my pain and to bring me to a condition where it will be possible to send me home. After the false false alarm of the previous week, I do not want to leave hospital again only to be readmitted quickly. They all agreed. The next day my oncologist scanned me extensively with an MRI machine before announcing that he had found a nodule behind the vertebra most infected with disease; this was likely to be causing nerve root compression and was given a high dose of radiation only a few hours later after the software was set up. Later in the day, because my temperature was a bit high, I had a chest x-ray to rule out chest infections.
The next day after barely managing to sleep, I began to feel the slow improvement of healing, of mother’s wisdom, gradually I was able to move myself into positions where I could wash and eat and generally get my head round the new normal, preparing for the next chapter in this story, the next stage on this journey. The day after that I was able to shower again, and the next night I found a comfortable position, as the full barrage of painkilling strategies was kicking in, and awoke after an almost full night’s sleep. During the day my lovely wife, my brother and many good friends have visited and kept me supplied with fruit and stimulating conversation. Although I must apologise to one or two who came just at the wrong moment and who discovered me falling asleep half way through sentences or into my soup, uttering incoherent noises and dribbling.
The people who work here do so because they want to help people in distress, cure their diseases, ease their pains, comfort their minds, help them find peace in the midst of a great deal of confusing activity and strange bodily interventions. They do not look after people, just as my Grandfather John Spence and his uncle Andrew Ewing did not feed people in order to make money.
It is one of the most pernicious evils of these societies that instrumentalism dominates relations and seeps into public consciousness to become an arbiter of more general relations. That what we get out of a relation or transaction has to be given a value in addition to the essential quality of that relation or transaction, something distinct that is “more than” the value of the moment of its taking place, and then expect this to be magically returned in an equivalent exchange; that we have learned all sorts of tricks and habits that enable us to create abstract concepts, which justify, explain and hierarchise our relations to our fellow human beings; that we judge each other not on the basis of who we are, but by what we might get out of a transaction; that our dominant economic system is underpinned by the processes of extracting monetary value from every relation between employer and employee, and made flexible only because this is capitalism’s only variable quantity – the value of work can be reduced and pushed down almost without limit, to the point that even families with parents in work are carrying so much debt, paying so much for the privilege of being alive, they are only a broken washing machine away from bankruptcy, while ruling elites can always buy whatever they want or need, as well as a lot more besides, that they only think they want or need, and can dispose of their property as and when they see fit.
For as long as the pharmaceutical industry dominates the market for substances that have legitimate medical uses, and for long as the much misunderstood Cancer Act remains on the statute book, we will be excluding much, restricting debate, closing down genuine trajectories towards cure and reproducing by default, by all sorts of assumptions about how our bodies work, how this permeates into assorted layers of ignorance and confusion about the way the world in general is, what we can expect from life, what it all might mean, what it is all about, all this being alive and breathing.
There is always hope for as long as there are people in the world like my Great Great Uncle Andrew Ewing and my Grandfather John Spence. Beautiful people like my colleagues and the many others who will stop their work or divert their other commitments to help another in distress; like the thousands who work as doctors, nurses, porters, ambulance drivers, radiographers, and auxiliary staff in all hospitals in this country. At the end of the day, it does not matter that all these people work within a system that is demonstrably underfunded, overstretched, and must communicate using non-technical-languages to an undereducated population about highly technical matters, employing misguided ideas about health in general, what is naturally possible and how the world is ordered. Because though these people work together because they want to work together to care for others, there will always be ways to find cracks in the system, to require of it no identity, no stake or authority, to use it only as a vehicle for compassion.
Perhaps I have not yet betrayed my mother’s wisdom; of course she descends too from Andrew Ewing. She, and my father, Bryan Duncan taught me well that virtue is always its own reward, that the value of all stuff is unique, that money is not an unlimited arbiter of success, achievement or status, that human relations have intrinsic value, that the greatest of all motivations is love. And I have not given up my mother’s dietary advice; I am picking carefully at the hospital menu, while my wife and brother supply me with a never-ending stock of fresh fruit.
Next to the mechanistic onslaught from pharmaceuticals and the precision targeted radiation specifically aimed at the progressing disease, my body continues to look after itself with a natural intelligence, a determination to be alive, a sheer love of life. At the last readings, my vital signs have settled down to within normal parameters; blood pressure, heartbeat, O2 uptake and temperature are what I would expect. My weight is still what it has been for months and the pain has mutated into general stiffness and discomfort, which creeps more towards mild agony, and sometimes, albeit briefly, exacerbates again to recent levels of crippling excruciation if I make particular movements – which I am learning how to avoid, but which appear nonetheless to be unavoidable. I still cannot walk unaided, but I do not expect this to last much longer.
I would like specifically to thank Kev, Corrie, Richard, Caroline, two Iains, Sarah, Fast Dave and Big Ian at Hobs Reprographics in Edinburgh, my brother Colin and his family, my beautiful wife Shona, whose suffering and pain are often ignored because of my condition, when in fact, as I have always noted, the distress caused to others by cancer is often greater than to the ones diagnosed. Which is why I support Maggie’s Centres and encourage others to do so too.
Most importantly, my thanks to the staff at the Edinburgh Cancer clinic, on wards 2, 3 and 11, at the WGH in Edinburgh, to the oncology team and in particular Duncan Mclaren for seeking out and destroying with such surgical and mechanistic precision the nodule of this hellish disease that was producing such excruciating pain.
Love and Peace.