Mentored by a Madman Read online

  13

  – The Bladerunner –

  The bladerunner is a young man who supplies black market medical supplies (including scalpel blades) for underground medical practitioners in a dystopian futuristic Manhattan. He was first conceived by Alan E. Nourse in his 1974 science fiction novel The Bladerunner and has no direct connection to Ridley Scott’s film of the same name.

  After his death in 1997, William Burroughs’ insights seemed to be even more connected to everything and anything and his terrible predictions had come to fruition. He was still a ghost in the soft machine but it seemed that he had come to life. The past, present and future all seemed to be happening at once.

  The pharmaceutical industry was the largest manufacturing industry in the world after the arms business. Healthcare was a multi-billion pound industry with ever increasing expenditure by taxpayers that ultimately led to staggering profits for the drug manufacturers. The pharmaceutical industry was devoted to profit from illness and doctors were a special interest group for disease preservation. The government was a machine that fed off power. Profit-driven medical science seemed determined to get the whole world using pills.

  I had now read all William Burroughs’ published letters and paid close attention to many of his laser-sharp recordings. I had buried myself in The Adding Machine, The Last Words, The Job, The Ticket that Exploded, Interzone, The Wild Boys, Cities of the Red Night and Nova Express and learned a great deal from his Paris Review and Playboy interviews. Burroughs was suspicious of monopolies and authorities and the pyramid of dependencies created by post-war consumerism. Control would lead to greater control but could never be a means to a productive end. It was a virus that infested the human nervous system; only by eliminating fear could we wrest back autonomy.

  I was still uncertain whether Burroughs had seen himself as a healer and a kind of voodoo scientist so I contacted James Grauerholz, who had first met him in 1974 and become his trusted companion, literary manager and adopted son. James had rescued Burroughs from a second treacherous descent into narcotic addiction during his residence in the Bowery. He wrote back on July 9 2014:

  William had a complicated attitude toward doctors, and to unpack it requires one to distinguish doctors who were actually treating William, versus doctors whose published writings had come to William’s attention – the Platonic Ideal of Doctorhood perhaps … For sure, he saw himself as some kind of doctor; he wanted to become a doctor – und so weiter.

  In later correspondence James directed me to Blade Runner: a movie. This 1979 novella was Burroughs ‘paste-in’ companion to physician-writer Alan Nourse’s science fiction novel. In the introduction Burroughs writes that the book is about the inflexibility and tunnel vision of vast service bureaucracies.

  The story begins contemporaneously when overpopulation in America has led to ever-increasing government control over the citizen in the guise of a nanny state that dictates a citizen’s terms of work, retirement benefits and medical care. Pressures are mounting for a National Health Act to impose a more equitable system of health care. After severe rioting in Manhattan and other American cities by the underclass, the National Health Act is passed, despite opposition from the drug corporations and private medical practitioners. Free healthcare finally becomes available to all citizens and residents of the United States of America. Nurses and doctors dance in the hospital corridors singing, ‘The best things in life are free’ and ‘we belong to everybody’.

  Within a generation of these reforms, average life expectancy has soared to 125, and is leading to a disturbing rise in the incidence of hereditary disorders, ‘everybody would be diabetic or diabetes-prone by the late part of the next century’. New plagues of Alzheimer’s and Parkinson’s disease begin to emerge in the aged. A biomathematician predicts that the planet will soon be flooded with the worst samples of humanity with the lowest biological survival value. At the same time public health complacency is leading to the return of vanquished contagions like smallpox; the profligate use of antibiotics creates flesh-eating bugs.

  By the end of the millennium, the government is becoming increasingly worried by reports of gangs of Naturist dogmatists demanding that all medicine be abolished. Senate rushes through an amendment to the National Health Bill stating that the ‘unfit’ (to be determined by a board of doctors and vaguely defined as a person over the age of five suffering from any form of hereditary disorder) are to be denied free healthcare of any sort unless they agree to sterilisation. All doctors from now on will work only for the State and private practice will be banned.

  By 2014, New York has become a world centre for underground medicine. Many roads are blocked with garbage and the potholes have been enlarged to serve as fishponds. Hydroponic guerrilla gardens flourish on rooftops, vacant lots and in basements. Treatments that could not be bought for any amount of money through official channels are now available in the back streets.

  The shoestring entrepreneur, the innovator, the eccentric, the adventurer, long banished to limbo by the coalition of the big drug companies and the FDA, reappear.

  More and more people are resisting the computerised regimentation of the State. Essential to this avant-garde network of experimental medicine are the blade runners who carry out the dangerous job of transferring medications and instruments from the research laboratories to the clandestine clinics.

  Burroughs the mystagogue is describing the demise of totalitarian healthcare systems, predicting the appearance of apparently new viral diseases like AIDS and SARS, and anticipating virotherapy for cancer. Everything is fictional and at the same time everything seems prophetic.

  When I had first read Ivan Illich in the seventies, his predictions of disaster had seemed too extreme. I was not wholly convinced that covetous doctors were causing more disease than they were curing and did not see why improved technology should automatically lead to less empathy or human care. I was also blasé about the potential harm done by wonder drugs. By the time I read Blade Runner: a movie, many of Illich’s ideas had become mainstream. Something was now rotten in the state of medicine. Healthism had eaten up 17% of the US Gross Domestic Product. The worried well had been converted into patients by medical screening programmes and disease mongering (shyness and male baldness were considered ailments). Western healthcare systems – private or socialised – were new villains and doctors had been downgraded to menial technicians. Insurance companies were breaking down the art of accurate diagnosis in order to limit reimbursement. Ghost writers employed to write up commercially sponsored guideline documents in predatory open access journals were degrading the medical literature. The internet was the most potent cause of hypochondria that mankind had ever devised. Even the most sincere and reputable doctors now had vested interests.

  Burroughs was imagining a new health model where people empower themselves to carry out their own experiments and provide their own alternative treatment. In these non-profit endeavours the people were prepared to challenge the authority of the State and take considerable risk. Some of the treatments available from the labs in the Lower City were highly dangerous and of unproven efficacy but this was viewed as an inevitable part of medical progress. People were making their own mind up about whether the risk was worth taking and carrying out their own investigation.

  In a further letter, James reminded me that Burroughs had argued that the split between art and science needed to be healed urgently and that belief systems like chaos magic that came from territories outside scientific materialism should at least be explored. Science needed to be much more intuitive and magical and magic more factual and analytical. He was convinced human will could influence physical processes. He told Ted Morgan, his first biographer:

  My viewpoint is the exact contrary of the scientific viewpoint. I believe that if you run into somebody in the street it’s for a reason. Among primitive people they say that if someone was bitten by a snake he was murdered. I believe that.

  – Literary Outlaw

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nbsp; Burroughs opposed the exalted status given to medical scientists. They were imperfect individuals and their claim to an ultimate truth was false. Free will needed to be defended. In an interview with Allen Ginsberg published in Journal for the Protection of All Beings in 1961 he replied to a question about how technological society should be managed without controls:

  Elimination of all natural sciences – If anybody ought to go to the extermination chambers, definitely scientists. Yes, I’m definitely anti-scientist because I feel that science represents a conspiracy to impose as the real and only universe, the universe of scientists themselves – they’re reality-addicts, they’ve got to have things so real so they can get their hands on it.

  The venal and self-serving Doc Benway used science as a strong form of control and a justification for his lack of humanity:

  How in the fuck should I know? I’m a scientist. A pure scientist. Just get them outa here. I don’t hafta look at them is all. They constitute an albatross.

  – Naked Lunch

  Doctor ‘Fingers’ Schafer began his presentation at the International Conference of Technological Psychiatry with absolute conviction:

  Gentlemen, the human nervous system can be reduced to a compact and abbreviated spinal column. The brain, front, middle and rear must follow the adenoid, the wisdom tooth, the appendix … I give you my Master Work: ‘The Complete All American De-anxietized Man’ …

  – Naked Lunch

  Burroughs was continuing to teach me things that had a direct bearing on modern medical practice. He made me entertain doubts about the dogmas of science and the preconceptions and received opinions that compromise objectivity. He reminded me to go on challenging authority and to try to break down my own ingrained outdated habits through mindfulness. Blade Runner: a movie was a warning that the National Health Service was under threat from Government appointed quangos and people who had no feel for what looking after sick people involves.

  14

  – Yagé Trip –

  Although I knew that the few who had made landmark contributions to the understanding of Parkinson’s disease had done so while they were young, through an inevitable accident of time I now envisaged them as if they had always been venerable sages. James Parkinson, the patron saint of the shaking palsy, was the only notable exception, having been admitted to the inner sanctum at sixty-two years of age.

  Parkinson was a radical and political pamphleteer, a palaeontologist of some distinction and a scientific conversationalist as well as being an apothecary. An Essay on the Shaking Palsy written in 1817, in which he describes six individuals he had observed during his travels through the Shoreditch streets, is a paragon of careful surveillance and accurate description. He hoped that his slim monograph would draw his medical colleagues’ attention to a previously unclassified disorder, and stimulate the great anatomists of the day to locate the responsible lesion.

  A wait of one hundred years then occurred before the cause for the slowness and stiffness was identified: a loss of melanin-containing nerve cells in the substantia nigra, a strip of nervous tissue in the midbrain. Then another fifty years passed before it was discovered that the nerve fibres projecting rostrally from the nigra to the corpus striatum (‘striped body’) contained dopamine. In 1990, lesions in the subthalamic nucleus of Luys in green monkeys provided evidence that excessive electrical activity in some regions of the basal ganglia circuitry occurred in Parkinson’s disease and provided the rationale for deep brain stimulation with intracerebral electrodes.

  Single-mindedness, dedication and a sprinkling of good fortune had allowed those responsible for these key breakthroughs to improvise their accumulated knowledge in resourceful new ways. Fortuitous events, seemingly unrelated to their work but dependent on their own particular interests, had played a part in their momentous discoveries.

  In 1997, a gene responsible for parkinsonism was found in an extended Italian family – the alpha synuclein mutation. This was saluted by the scientific press as the first identifiable cause of Parkinson’s disease and despite the great rarity of the mutation it led to a sea change in the approach to research. Since then a great deal of enquiry has focused on the regulation of alpha synuclein in cells and its interaction with other molecules. Alpha synuclein is a ubiquitous protein that is bound to membranes in nerve endings and is important for the trafficking of storage vesicles. Nerve cells communicate by a process that is part electrical and part chemical. The signal that passes along the nerve fibre is electrical but when it reaches the end of the axon, neurotransmitter packages stored in tiny envelopes called vesicles take over. If the highly regulated release of dopamine from these tiny pools is disrupted, electrical traces can no longer be transmitted to neighbouring nerve cells and the circuits go down. If alpha synuclein is the Rosetta Stone for Parkinson’s disease then the cellular damage responsible for the symptoms of the illness must extend far beyond the substantia nigra and even beyond the brain.

  Alpha synuclein misfolds and sticks together inside neurons, slowly choking up the motor highways and slowing the essential transport of cellular proteins. This causes the nerve fibres to die back, eventually causing nerve cell death. If the cascade of chemical reactions that triggers this abnormal protein clumping can be worked out, a new therapeutic era of vaccines and ‘synuclein busters’ might emerge.

  The chastening reality, however, is that despite these scientific breakthroughs in our understanding and the investment of billions of pounds by the pharmaceutical industry, no treatment superior to L-DOPA has been developed. The last effective treatment to be marketed for Parkinson’s disease in the United Kingdom is a L-DOPA gel (Duodopa) that has to be infused directly into the gut through a gastrostomy tube and costs the taxpayer a ludicrous £35,000 per patient per year.

  Knowing of my interest in Burroughs, my research team presented me with the mimeograph Apo-33 Bulletin: A Medical Regulator; A Report on the Synthesis of the Apomorphine Formula distributed by City Lights, San Francisco. On the front was a picture of the label from a box of the apomorphine hydrochloride pellets identical to the ones we had used in some of our early clinical trials.

  Apo-33, written in crude type with rub-outs and sprinkled with barely legible printed handwriting, was Burroughs’ prescription for society’s ills. He now felt that his earlier account of apomorphine published in the British Journal of Addiction had been an edited cop out:

  My attempt to attribute good will where it patently does not exist proved ill advised. I see no reason at this point to pull punches in the expectation of popularity.

  The academic medical press was just another arrow in the quiver of the pharmaceutical establishment. It controlled information about addiction and apomorphine in the same way mainstream publishers stifled innovation and radical thought in creative writing. Guerilla writing in little magazines was Burroughs’ best defence.

  By the time Apo-33 had been published in 1965, he had realised that the medical industry was not going to share his optimistic view of apomorphine. He wrote that the American Narcotics Department and Public Health Service were errand boys for the White Goddess and were paid in White Junk. Medical science was determined to reduce the whole of mankind to the helplessness of addicts. A drug-free, phobia less society was inconceivable; the political stakes were too high.

  He wrote that apomorphine, ‘like a good policeman did its work and left no trace’. It steadied the system and regulated the body in the same way cut-up writing regulated the power of the word. It was through reading Apo-33 that I first appreciated Burroughs’ views of the controlling power of language. It made me think about how important the right word was at the right time in medical practice, but also how often a healing silence had come to my aid in response to anguish and despair.

  By 2010, the feelings of alienation I had experienced as a final year medical student had returned and were slowly turning me into a belated but committed freedom fighter. I could now see much more clearly where things were going wrong. M
any of my colleagues shared similar opinions and we celebrated our occasional small victories against the Clinical Directorate with childish pleasure. The National Health Service regarded neurology as an expensive, largely talking speciality with woolly outcomes and there was never enough funding. Performance was now judged by waiting times, not quality of care or innovation. Professionalism was being replaced by brainless accountability reflected in meaningless league tables. After the serial murders committed by Doctor Harold Shipman had been uncovered, no practitioners were to be trusted; after the Alder Hey Hospital organ scandal all pathologists were suspect. Burroughs’ bête noires from Apo-33 had been joined by some new and less publicised tyrannies.

  In the pretence to be more scientific, only the very latest and most immediate data was now considered trustworthy. Painstaking, clinical, pharmacological observation in small numbers of patients was disparaged as ‘eminence based medicine.’ New was better than old, more was superior to little, complex always trumped simple, and early detection of disease was essential – such truisms reflected the prevailing zeitgeist.

  A culture that encouraged freedom, intellectual diversity, flexibility, and originality, had been very much in evidence when I first began my research at University College Hospital. Scientific collaboration then was based on equality and contribution, not authoritative commands delivered from on high. In 1990, I had obtained permission from the UCH Research and Ethics Committee, the Metropolitan Police and the Home Office to carry out a trial of marijuana cigarettes in Parkinson’s disease. The trial had been suggested by one of my patients who had observed that when she smoked cannabis her tremor disappeared for several hours. The volunteers puffed ‘joints’ on Jack Hambro Ward at the Middlesex Hospital while we recorded the drug’s effect on their tremor and slowness. The results of our trial were negative but the role of cannabinoids in the treatment of neurological disease later became an area of intense research interest. Such a proof of principle study would now be deemed bad research and not allowed even though it had revived interest in a forgotten treatment.