Abstract and Keywords
The medical surveillance of bodies as entities divorced from human identity and experience is a part of a general cultural move to see bodies as passive objects and targets of power. Sensations, said Descartes, aren't thoughts. Feeling one's body, noticing one's location inside it, is part of bodily experience; it has nothing to do with identity, whose essence lies in abstracted thought. Also, he believed that it's through the pineal gland that the mind perceives and acts upon the body. The chapter discusses classical neurology and how this approach fits the body-as-machine model of Western medicine, and the unimportance of what Virginia Woolf called ‘the creature within’. This chapter argues that people may experience the world through their bodies, but their bodies alone can't tell us what the experience means.
Living bodies are just animated corpses. The first recorded dissection of a human body was performed in Bologna in 1315,1 although it probably started much earlier, around 300 BC in the Nile Delta.2 Examination of corpses was increasingly seen as an essential methodological tool for European doctors. Most of the early post-mortems were done in winter to prevent putrefaction, and on the bodies of executed criminals as a sort of final punishment. However, reverence for the dignity of human beings was too strong among the Greeks to allow dissection of dead bodies in Hippocratic medicine, and traditional medicine in China and India, and in Islamic countries, forbad human dissection for the same reason. Towards the end of the 18th century, medical men in Europe started to apply to the bodies of living patients the pathological anatomy learnt from corpses. Patients to be examined were asked to lie flat, like corpses – the standard examining position, even today. The classification of disease shifted from symptoms as experiences narrated by patients to the organic lesions found in dead bodies: the real disease was the one uncovered by the pathologist’s knife, not the one the patient described. The corpse remains a (p.72) methodological tool and ‘regulative ideal’ in modern medicine.3
The medical surveillance of bodies as entities divorced from human identity and experience is also part of a general cultural move to see bodies as passive objects and targets of power. Clinical examination and the inspection of criminals in prison, soldiers in their barracks and children at school, all proceed on the assumption that the ‘objective’ analysis of bodies, bypassing the knowledge of their owners, isn’t only possible but essential to the development of healthy corporeality.4 The ‘medical model’ employed in modern clinical practice has been described in the following terms: ‘…that diseases are universal biological or psychopathological entities, resulting from somatic lesions or dysfunction. These produce “signs” or physiological abnormalities that can be measured by clinical and laboratory procedures, as well as “symptoms” or expressions of the experience of distress, communicated as an ordered set of complaints’.5
When doctors take medical histories from patients, they invite them to view their own bodies as objects: What happened to your body, when? What treatment was it given? What diagnosis did the doctor give the disease?6 By the late 18th century, the patient had effectively been withdrawn from the social world and reconstituted as ‘myriad sets of mechanically juxtaposed structures’.7 This was also a neat way of dividing up bodies so that different bits of them could be owned by different medical specialities. Developments in natural philosophy in the 17th century and later added an even more anti-humanist metaphor to this withdrawal of bodies from the social world: that of the body-as-machine. Descartes’ famous pronouncements on the problem of the body and (p.73) consciousness – the thoughts of a morbidly depressed and solitary young man – produced the somewhat tautologous conclusion that self-reflection is the essence of personhood. Sensations, said Descartes, aren’t thoughts. Feeling one’s body, noticing one’s location inside it, is part of bodily experience; it has nothing to do with identity, whose essence lies in abstracted thought. But, if the mind is ethereal and insubstantial, and the body is solid and material, how are the two hooked onto one another? Descartes knew there was a problem here; for many years, he obsessively pursued the answer in the form of the pineal gland. This reddish-grey, pea-sized structure, located in the centre of the brain directly behind the eyes, is activated by light and is responsible for regulating many of the body’s biorhythms. The pineal gland has often been called ‘the third eye’ and is regarded as having mystical powers, linking the physical and spiritual world. Descartes believed that it’s through the pineal gland that the mind perceives and acts upon the body.8 He thought the connection was mechanical, with the mind being able to move the pineal gland, so producing voluntary action, and the sensory organs being capable of transmitting information to the pineal gland and so to the attached brain. Body and soul, he said, meet at this point: the pineal gland is the site of the immaterial soul. There needs to be a point of meeting if the two are to share the same identity.
So-called Cartesian dualism has been held responsible for many sins and errors in the way we conduct ourselves and conceptualise knowledge. Its resonance with other aspects of masculine culture in Europe certainly helped to create a new science of the body. In this new science, mechanical metaphors replaced colonial ones: anatomists (p.74) were no longer Columban explorers, undertaking heroic voyages into the unknown interiors of the body and leaving their names on organs as insignia of possession.9 But there’s an uncanny way in which Cartesian dualism does resonate with everyday experience. One day when I went to see my physiotherapist, I said, ‘I took my hand swimming this morning’. I put it like this because that was how I thought of it: I took my hand as an object; it didn’t come with me as part of me. She laughed and remarked that her patients often spoke like that, as though their limbs were disconnected from their selves. In the same way, the owners of malfunctioning limbs speak of ‘the’ arm or ‘the’ leg, rather than ‘my’ arm or ‘my’ leg. There’s nothing quite as disconcerting as seeing where your hand is in space – in water, on a hard table, on a cold surface - but not feeling it. It’s ‘the’ arm, rather than ‘my’ arm which moves.10
In A leg to stand on,11 Oliver Sacks talks about feeling in the middle of an electrical storm: electrical impulses jumped between the fibres in his damaged leg, reminding him of Frankenstein’s monster, which crackled into life through being connected to a lightning rod. The impulses come and go: one feels like the labels on electricity pylons which read ‘Danger of death. Live electricity’. In the early days after the fracture, I could only make my hand feel electric by holding it above my head. Later I learnt other positions and points on the hand which, when pressed hard, would make the nerve tingle. It wouldn’t normally have been classed as a pleasant feeling, but just feeling something was so much better than feeling nothing, and I always hoped that suddenly the impulses would build up to a point where the whole nerve would come alive again. For months I believed in this incipient (p.75) moment of reincarnation: an instantaneous rebirth, the numbed nerve finally unable to resist the life-giving forces of electricity, and so provoked into normal function again. I had no language for formulating any of this, even to myself, and so experienced it as a period of chaotic, obsessive iatrogenesis. What were these feelings? Were they feelings? What did they mean? Lacking an appropriate language, I could communicate my concern to no-one, and none of the doctors I saw asked me to describe what my hand felt like. I began to wonder if I were mad. Inevitably, I came to think that the mark of an invalid is that her or his experience is invalid.
‘How much pain are you in?’ was the recurrent question the doctors asked. It was taken for granted that the main ‘subjective’ consequence of my fractured arm would be pain, and that a key part of my medical treatment for a long period would be the pharmacological management of this pain. The lawyers, arguing among themselves in their offices in Denver about the White Creek Lodge’s liability, had the same preoccupation. How would I describe the pain? How many painkillers was I taking? The word ‘pain’ was the only way these ‘experts’ could recognise how I felt: it was the only legitimate ‘objective’ label they were able to attach to the concept of my ‘subjective’ experience.
Obviously there was pain at the beginning, but this quickly receded. After the first few weeks, I took no painkillers, because I disliked their mental effects and they had no impact on the unpleasant sensations of stiffness, immobility and paralysis. Pain, like whatever I was feeling, is pre-language: notable for what Elaine Scarry calls its ‘unshareability’.12 Before the mid-20th century, pain played a very minor role in medical (p.76) education. By the mid-1920s, a clear distinction had emerged between ‘objective’ and ‘subjective’ pain. The first was what doctors thought patients ought to be feeling; the second, what patients complained of, and which might well have no medically discernible cause.13 Patrick Wall’s observation as a medical student that the explanations given by doctors to patients who were in pain ‘were overt rubbish’ led him to propose a different theory, one in which sensory and cognitive mechanisms are united: what we feel and what we believe and know are the same. This is different from what we have to do in order to cope with pain.14 Pain forces the body into our experience: to keep ourselves together, we call the body ‘it’ and pain, the child of an abstraction, can be thought of as something separate from ourselves.15
How do you describe the numbness of nerve paralysis? It isn’t like having dead flesh: ‘Most people would call numbness a sensation…it is the feeling you get when the normal feeling of touch is not working properly’.16 Gerald Pillsbury, with multiple sclerosis, tries to describe the sensation in his feet: ‘I might start by saying that my feeling there has changed considerably from what I remember it being ten or fifteen years ago and go on that I experience tingling, sometimes burning, sometimes a deadening heavy sensation.’17 ‘Loss of feeling’ is the phrase that comes most easily to mind, but this is a gross oversimplification, because, rather than loss, there’s a buzz of diffuse sensations, so confusing that they occupy one constantly. Amputees have a similar problem: there’s no language, other than that of pain, for describing what having an artificial limb fitted feels like. Different prostheses ‘feel’ very different, but the person in the amputated body has to develop her or his own metaphors (p.77) for communicating how, for example, one artificial foot feels more ‘foot-like’ than another.18
It’s with a sense of triumph that I finally locate a medical paper with ‘tingling’ in its title. ‘Tingling’ I read isn’t painful; it’s a slightly uncomfortable sensation that patients usually compare with electricity. Yes!, I think, here’s someone who knows what he’s talking about. The authoritative tone continues: tingling is a sign of nerve regeneration, technically the process of new axons growing. The more this happens, the more tingling you get, but tingling stops after eight to ten months.19 A mythology of precise time is characteristic of the medical approach, but what is it based on? I’ve had six plus years of tingling, and there’s no sign of it stopping. Another such mythology, present in the textbooks20 and relayed to me by several of that doctors I saw, is that nerves regenerate at the rate of one millimetre per day. One doctor even got a tape measure out and assessed the distance on my arm this regeneration process would have to cover: in thirty weeks, he predicted cheerfully, all would be well. The thirty weeks came and went, and there was no noticeable difference. It’s now over 342 weeks, so I suppose that’s it. There surely can be no exact science of the body without this most authentic element: what the person who lives in the body knows.
After the first months, my hand alternated between more-or-less total numbness and a kind of dim, background ‘pins and needles’ feeling. There was a period when I would get odd shooting pains in my palm and fingers, sometimes after exercising the hand, sometimes not, and these, I observed, would often be followed by an incremental enhancement of my hand’s capacity to notice what it was doing. But I thought of this as a hand (p.78) problem, not a brain one – the phenomenon felt very localised in the apparatus of the nerve. It was Sacks’ electricity, reminiscent of mechanical monsters brought to life by lightning. The main medical approach to assessing these odd sorts of sensation is through nerve conduction tests. The patient goes to a specially equipped room and is attached to electrodes. One electrode stimulates the nerve with a mild electric shock, and other electrodes record the resulting electrical activity. The distance between the electrodes, and the time it takes for the electrical impulses to travel between them, are used to calculate the efficiency of the nerve. Such tests are the mechanical model of the body par excellence; the patient doesn’t have to speak, or even, really, be conscious at all. The tests proceed on the simple assumption that ‘…a stimulant current, applied through surface or needle electrodes, evokes a sensory action potential that is self-propagated by the nerve, and is recorded at some distance in either direction along the nerve’.21 The results are judged using standardised scales, commonly the British Medical Research Council scale, originally introduced in 1954.22 The lower points on the scale define ‘unsatisfactory’, and the higher ones ‘satisfactory’, recovery. According to one textbook, The paralysed hand, ‘Electrical testing of motor response and nerve conduction has contributed significantly to our knowledge of nerve function and regeneration. It is…quite impressive to both patient and physician.’ Patients like it because of its aura of ‘superscience’ and ‘electronic gadgetry’; doctors approve because the test results ‘are given quantitatively in milliseconds with quite an impressive array of figures.’23
(p.79) The limitations of such tests are most powerfully illustrated in a story told by Sacks. A 28-year-old French woman was interred in the Salpêtrière hospital in Paris in the early 1900s, complaining of ‘insensibility’. She said she was no longer aware of her limbs, head, or hair, had no sense of taste or smell, and couldn’t feel cold: ‘I have to touch myself constantly in order to know how I am’.24 Functional tests showed normal sensitivities to touch, heat and cold, and normal smell and taste, conflicting with the patient’s own account. Sensation – the physical discharge of skin receptors when a stimulus is applied – isn’t the same thing as sensibility, which is the ‘cortical interpretation’ of the stimulus: what the owner of the stimulated body feels.25
I had four sets of nerve-conduction tests at three different hospitals. The early ones showed impaired sensation to light touch and a ‘severe ulnar deficit’ at, or around, the right elbow. The last provided evidence of some ‘objective’ recovery, but continuing abnormality for touch and vibration, the experience of heat as pain, and hypersensitivity to cold. The tests said nothing about sensibility – about what I felt.
Physiotherapists have relatively low status among health care workers, but they play a major role in the ‘rehabilitation’ of patients for whose conditions there are no obvious medical solutions. Nerve-conduction tests are inadequate ways of assessing sensation, but something nonetheless has to be done with the patient who sticks to her or his story that lack of sensation is the problem. This form of rehabilitation is called ‘re-education’. The textbook rationale for re-education is that ‘the motivated patient who has a sensory deficit can be trained by making use of learning principles (i.e. attention, feedback, (p.80) memory, and reinforcement) to maximise function in the hand…the patient can learn to correctly decode the altered messages sent to the brain’.26 Re-education is about learning the new language spoken by the hand,27 ‘representational remodelling’,28 re-programming the ‘brain computer’,29 or reorganising the brain’s ‘cortical map’.30 The brain’s map of the body has some flexibility: damage to one part of the body may not only wipe out that part of the brain map, but teach other parts to change. For example, some of the brain’s auditory area in congenitally deaf people is reallocated for visual use. The reading finger of blind people who read Braille has an extremely large representation in the tactile parts of the brain.31 When fingers are amputated, rather than over-used for reading, the cortical representation of the adjacent intact finger expands to fill the vacated space, like greedy relatives who grab any opportunity to have the house to themselves.32 Significantly, of course, metaphors of reorganising or re-programming the brain bypass the person: it’s the cortex, not the self, that’s the object of the exercise. Rehabilitation work is work on the body, but this focus perpetuates the very problem it seeks to solve.33
Still, to reach the cortex, rehabilitation workers must confront the whole patient. Theresa, the occupational therapist I’m finally sent to see, is a specialist in hands. She and her colleagues operate in a crowded under-resourced space stuffed with sagging teddy bears (for child patients) and cupboards from which they magic a wonderful array of technical aids, despite lack of funds. When I was first referred to Theresa, my arm was free from its sling and holding pens again. It wasn’t straight, and the elbow often hurt, but my main ‘complaint’ was (p.81) the lack of sensation in my hand and the fact that I couldn’t do very much with it.
Theresa sets to with great passion and determination to do what she can. First come several more splints to replace the tortuous contraptions provided by the fracture clinic which she says were quite wrong. Then she makes me one for the palm of my hand. I hadn’t noticed until she pointed it out to me, but one consequence of damage to the ulnar nerve is that you lose the concave shape of your palm. Palms aren’t flat, you need the concavity to work the fingers. So the palm splint, worn most of the time for several months, enables me to separate my fingers again. That’s how I start writing this book, sitting in the British Library wearing my palmar splint, which makes my handwriting just about legible, even if it attracts some curious attention.
I am also given lots of exercises to do. At first, these involve rubber balls of various consistencies, all colour-coded, and lengths of stretchy stuff made of rubber latex, similarly coloured. I’m pleased to graduate from yellow (easy) to red (more difficult) to green (even more difficult). Some of the exercises involve plunging my hand into bowls of lentils or rice or peas, or brushing it against differently textured fabrics – swathes of velvet, silk, linen, and wool. All this is designed to restore my hand’s old ability to tell what kind of thing it’s touching, instead of being told by me.
There’s no end to Theresa’s inventiveness: she follows the precept that ‘If it works for you and your patient, use it’.34 I’m sent out to buy Chinese metal jingly balls and later golf balls, and one set of exercises requires a tin weighing in the region of 450 grams (organic baked beans = 420 grams). On one occasion, when Theresa asks me (p.82) what I still can’t do, I give her a list, ending with ‘Oh, and I can’t open a taxi door’. The handles on the doors of black taxis in London require a particular strength in the thumb and forefinger, which is only notable in its absence. ‘Ah,’ she says thoughtfully. The next time I go, she digs into her handbag and produces with a flourish what she calls my ‘cab door exercise’. To make it – a short pole with an excrescence at the side (see Figure 3) – she’s enlisted the help of her husband, who’s in the building trade. I take my cab door exercise home with enormous joy and spend my evenings practising it – this pitiful preoccupation is what illness does to you. A few weeks later, a taxi driver must have been completely mystified to hear this woman climbing into the back of his taxi shouting, ‘I did it!’.
Theresa makes maps of my hand, using a modern variant of the Head-Rivers technique (see Figure 4). The maps are coloured red, green and blue, depending on what I detect different parts of my hand feel when she tests them with filaments of different thicknesses. The filaments are hairs of different diameters glued to wooden rods, another apparatus of (p.83)
My hand exists in its coloured representation in Theresa’s file. It still doesn’t exist in my head. Theresa diagnoses the ‘proprioceptive deficit’ of the textbooks, which means we must do our best to persuade my brain (p.84) that it still has a right hand. I feel like a geographer, recharting old territory in a new way, but geography was never my strongest subject. I’m one of those spatially blind people to whom east and west make no sense. Perhaps this accentuates my present mental inability to notice where my hand is on my body.
Enter a whole new array of material aids. On the precept that the brain needs to be reminded the hand is there, Theresa equips me with lycra gloves, made in China, with and without fingers, and with tubigrip compression bandages, to be worn the whole length of the arm for as much of the day as I can bear them. The gloves are for the night and when it’s cold. They have the same function as the tubigrip bandages, but they also help to keep moisturising cream in contact with the very dry skin which covers the affected part of my hand – another symptom of nerve damage. Sometimes I laugh at myself with all this equipment, but I don’t care. The first winter Theresa offers me a special plaster to wrap around my little finger when I go out. Without the plaster, the finger rapidly goes white and sticks out at an immovable angle. The paradox is the coexistence of the two feelings: intense cold and numbness. I try all sorts of gloves and can never find any that keep my right hand warm. Like the geography problem, this coldness has a biographical consistency: for as long as I can remember, I’ve had horribly cold hands and feet. My elder daughter finally finds me a solution in a sports shop: little packages of charcoal which, when shaken, give off heat to warm the hands of mountaineers. There are also little plastic sacs of gel with ingenious on/off buttons, but these require saucepans of hot water, and so are altogether more of a performance.
(p.85) Most of the progress is far too slow for me to notice, despite the fact that the borders of the colours on Theresa’s hand maps shift slightly over the weeks and months. This is what makes me wonder about ‘alternative medicine’. I’d never had acupuncture, but it seemed intuitively possible that whatever is preventing the recovery of my ulnar nerve might be aided by an approach based on the principle that a healthy body is marked by the free flow of energy through it. I’m also attracted (on the basis of total ignorance) by the idea of needles stimulating what I think of, à la Sacks, as electrical activity.
In the UK, acupuncture is the most commonly used of all alternative medical treatments: about 7% of adults have had it, which adds up to some three million acupuncture treatments a year.38 When I first went to an acupuncturist, I explained that I didn’t really want to understand the theory; I just wanted the results. I didn’t especially believe it would work, and, if acupuncture is one of those treatments where the patient’s belief in therapeutic efficiency is critical, then we’d both be disappointed.
The first few sessions with Niran Samak, my chosen practitioner, do no apparent good at all. Since I’m paying £50 a time, I’m more disgruntled than I might otherwise have been. However, it’s undoubtedly very restful, lying there on Niran’s couch with my eyes shut, listening to the restricted cadences of taped Indian music. Niran himself sits silently, taking notes or moving so quietly in and out of the room that I’m only aware of his movements because the flow of air round the couch changes. I’ve never met anyone who could move so imperceptibly, and he’s tall, over six feet, more with the white turban he (p.86) wears to complete his healing outfit, which is designed to counter his native middle-class Englishness.
Niran puts the needles in both my feet, both my hands and sometimes my head as well. He uses light treatment to boost the needles’ effects. A natty little chrome lamp is focused on the needles in my right hand, and light is channelled through jewels. This ‘gem therapy’ is another ancient healing system, derived from over 5,000 years’ experience of the medicinal properties possessed by the earth’s gemstones. Electronic gem therapy lamps, such as the one used by Niran, pulse energy at different frequencies through high quality gems, thus amplifying what are thought to be the stones’ inherent vibrational healing powers. Different stones are recommended for different health problems. My hand is treated to diamond and orange carnelian light, said to produce stimulating, warm bio-energy, activity and circulation. It’s the iron oxide that gives carnelian its bright colour, and most carnelian used these days is stained chalcedony from Brazil or Uruguay – though the best stuff is said to come from India.39 I like the feeling I get in my hand from a combination of the needles and the carnelian light, but, rather than being cooling, it’s a bit like putting my hand on a sunbed. After a few minutes, I get this sensation of warmth in the affected part of my hand and then the fingers start moving, agitating themselves back and forth, quite beyond my control. My brain observes what my hand is doing and thinks, ‘How interesting’. After the session, I take my warm hand home on the bus, nursing it like a prize, happy at how it feels a little bit more like part of me again. I probably grin inanely at my prize all the way home, as though I’ve been on a very successful shopping expedition – which I have!
(p.87) After several months of all these attentions, I have a conversionary moment. Walking down a street, I suddenly feel this very odd sensation in the numbed part of my hand. It’s disconcerting, quite worrying in fact; but, when I look down at my hand, I can see that all I’m feeling is the quite wonderful ordinary sensation of raindrops falling on my hand. Presumably the improved functioning of the nerve has increased the sensibility of the skin, but my brain can’t recognise this very ordinary sensation without some help from me.
We may experience the world through our bodies, but our bodies alone can’t tell us what the experience means. When Mike May, blinded in a childhood accident at the age of three, recovered his sight through surgery forty years later, he had enormous trouble working out what he was seeing. Something orange on a baseball court was probably a ball, but it didn’t look round to him. He could recognise his wife only from her hairstyle and the clothes she wore. The expressions on people’s faces eluded him most of the time (his own face was nearly expressionless). Mike kept a diary recording his re-introduction to a sighted world. Six weeks after the surgical bandages were removed, he wrote: ‘I have been noticing some discomfort when I use the phrase, “Nice to see you”. I have always used that word quite comfortably. This phrase means much more than just nice to see you with my eyes. It means good to be with you again; nice to be in your presence; nice to hear you; etc. Now, when I say, “Nice to see you”, everyone takes it literally. Suddenly the phrase is one dimensional instead of multi dimensional.’40 Laboratory tests showed lack of activity in some of the areas of Mike’s brain that process visual information.41 Seeing for blind people can (p.88) so disrupt their normal tactile understanding of the world that they feel, paradoxically, lost: a third of those who have their vision ‘restored’ prefer to be blind, living in dark rooms and walking with their eyes shut.42
Each time, the acupuncture’s magic fades after a couple of days, but there is progress. I seem to be getting the muscles back in my hand. This is what the textbooks and the great nerve man at the specialist orthopaedic hospital to which I’m referred say never happens. Mr Elmwood, dapper, silver-haired and respectful, sees me when I insist to the fracture clinic doctors that I can’t be cured if I still can’t feel my right hand. He at first thinks there’s surgery he could do, and then later dismisses this when he sees the results of the acupuncture. The last time I see him, his departing words are, ‘Give my best wishes to your acupuncturist’. Theresa’s so impressed she asks if she can come with me to observe an acupuncture session. She watches the involuntary busyness of my hand when Niran’s put his needles in, and she talks to him about my ulnar nerve and her understanding of what’s going on. He talks to her about chi and yin and yang, and I see her nodding and grow silent at this clash of paradigms. The episode reminds me of a visit I made to China twenty three years ago, with a deputation of scientists from the World Health Organization, to meetings about maternity care. In the hospitals we visited, we saw the proponents of Western and Chinese medicine standing either side of patients’ beds, discussing with each other and with the patients which particular treatments from either paradigm to try.
A key precept of acupuncture is the inseparability of mind and body. The theory underlying acupuncture conceives a radically different relationship from Western (p.89) medicine between the mind and the body. Most modern acupuncture is based on ancient Chinese thinking: that a critical constituent of the body is an energy force called ‘chi’. Chi circulates throughout the body to nourish and protect all the tissues. Acupuncture activates and balances the chi and so prevents or treats illness. Very thin needles are placed in the acupuncture points, which are small dots on the 14 major channels – meridians – within which the chi circulates. A striking correspondence has been noted between traditional acupuncture points and physiological features, such as peripheral nerve junctions.43
At Theresa’s suggestion, I start to play the piano for physiotherapy. I begin with simple exercises: moving the thumb and each finger up and down slowly on the keys. A colleague at work who’s a musician brings me an exercise to practise: a set of chromatic broken chords, which is particularly good for the individual movement of my affected fingers. Then I go back to the old scales and broken chords of my childhood, the tatty scale and exercise books kept for forty odd years. The apposite term ‘broken chords’ isn’t lost on me. I feel like a child again, playing those scales. I’m back in the stuffy front room in Acton with Mrs Poon, my fussy piano teacher, and her tall skinny husband with sticking out ears, who waters the garden outside the fake mullioned windows, while his wife drills me in child-adapted versions of the classics and as many broken chords as she can fit in.
I develop a routine for this, as for everything else: each night on the way to bed I sit in the darkness and play one contrary motion scale in C with both hands, then a rising octave of scales with the right hand and a similar set of broken chords, both major and minor. The (p.90) darkness helps me to focus on the relationship between my brain and my hand. This is all okay as long as I think of it as physiotherapy, but if I think of it as music I get upset. What I can do now is so much less than I’d been able to do once. A 74-year-old man, disabled by a stroke, when interviewed for Gay Becker’s study of Disrupted lives put it like this: ‘My hand – this is the awful part. I try to work with it every day but it’s awfully difficult. One thing has killed me, broke my heart – that I can’t play the piano any more. I loved it better than anything.’44
I can hear my hand hitting the right or wrong note, but I have little sense of where my hand is, and the contact between my fourth and fifth fingers and the piano keys is an abstract concept. But then an interesting thing happens. One evening, I’m brave enough to put the light on and try some real music. I play some Mrs Poon Grade 4 pieces. Not very difficult ones, but ones I’d played a lot and had been fond of. One of them, an ‘Andante sostenuto’ from Mendelssohn’s Christmas pieces, had a particular symbolic significance because I’d played it every morning before all my school exams. And when I play these tunes now, forty-five years later, with my damaged hand, the familiarity of the music brings some sensation back to my hand. It’s as though old pathways between the brain and the body – between ‘me’ and ‘it’ – are being retrodden, causing electrical impulses to flow where before they’ve been blocked. Nothing of the kind happens when I play new music. I struggle with the notes, but whether I get them right or wrong makes no difference to what my hand feels.
There is, and remains, this paradox: I don’t feel normal, although I am, apparently, cured. Classical neurology is based on the concept of function, not on that of (p.91) ‘subjective’ perception. Restoration of function is what counts, and it’s perfectly compatible with a continuing impairment of sensation, and of the brain’s ability to recognise the repair that’s occurred in the damaged limb. This approach fits the body-as-machine model of Western medicine, and the unimportance of what Virginia Woolf called ‘the creature within’.45 It helps to explain why there’s been much more research into motor function than into sensibility, despite the fact that, without sensation, the hand is virtually useless. This is why tests of functional ability are a poor guide to what people with damaged hands can actually do.46 Medical scientists know very little about the relative importance of these two sorts of factors they’ve identified as important: the peripheral (what happens in the hand) and the central (what happens in the brain).47 Perhaps the missing link has something to do with the person.
In any case, what is ‘normal’? When my left hand was assessed as a comparison in the nerve conduction tests, it was clear that all the measurements on my right hand were grossly abnormal for me. My feeling that I’m being left out of all this medical appraisal of my condition is confirmed when I’m sent copies of my medical notes because of the legal case against White Creek Lodge. One letter from the London fracture clinic to my GP asserts that I have ‘no particular complaints’. I don’t recall anyone ever asking me about the many ‘complaints’ I did have. Another such letter notes that I have developed a ‘valgus deformity’ (a bony lump on the inside of my elbow), but that, ‘cosmetically’, I am ‘accepting’. Accepting of what? None of the doctors ever asked me how I felt. They looked at my arm and my hand, and assessed the function of both, according to their own (p.92) ‘objective’ tests, but they never inquired what they felt like to me or what it was like to live in a body with these disabilities. Thus, it was perfectly alright to discharge me as ‘cured’ eleven months after the fracture when X-rays showed my bones had mended. There was nothing more the doctors could or should do.
The second point at which I’m told I’m cured is when Theresa reviews my notes and my hand, and then congratulates me on having regained an impressive degree of normality. ‘It may look normal to you,’ I say, ‘but it doesn’t feel remotely normal to me. In fact, a lot of the time I can’t feel it at all.’ Theresa has no way of knowing that I can’t feel my hand unless I tell her. Yes, she has her coloured maps, but these only chart my brain’s ability to distinguish when something is being prodded against my hand; they don’t describe what I feel. The difference is that Theresa listens when I tell her; she isn’t a machine. Afterwards, when we discuss it, she says that my articulateness as a middle-class patient (she doesn’t put it quite like that) is what makes her listen. When Jean Cocteau was in a clinic for opium addiction, he asked one of his doctors why he spent so much time treating him. The doctor said ‘that he at least had a patient who talked, that he learnt more from me, being capable of describing my symptoms, than at the hospital’.48
Theresa’s attentiveness (for whatever reason) means that together we have overturned the teaching about ulnar nerve paralysis in the textbooks. Much more is possible through ‘re-education’ than they say it is. Her final experiment with me is the use of mirrors to deceive my brain into thinking the ‘bad’ hand is in fact the ‘good’ one. It’s a technique that was first used to reduce the (p.93) pain of amputated limbs: the image of a normal limb is superimposed on the amputated one using a mirror, and pain goes down.49 Theresa gives my bad hand a task to do which it can’t, and then she sets up a mirror and asks me to try again. My eyes, looking in the mirror, tell my brain that the bad hand is the good one, and so the task can be done.
It seems such an easy trick. But who or what is deceiving whom or what here? Can the relationship between the eye and the brain be so direct, so ignorant of the knowledge that I have, as the person who owns all these body parts, that there’s a deception going on? And then it seems that this transition from one side of the body to the other is something that the body can do all on its own. About three years after the fracture, I start to wake up in the mornings with both hands numb. The numbness in the undamaged hand is in exactly the same area as in the damaged one. The difference is that, when I wiggle my fingers, sensation returns in one hand and not in the other. My left hand appears to have developed some sort of couvade syndrome: like the partners of women in some societies who have labour pain, it’s come out in sympathy. Then my left hand goes further and develops osteoarthritis – again, in just that part of the hand that is affected by the nerve problem in the right. ‘Of course’, says my acupuncturist, when I tell him. Everyone else just thinks I’m mad. What the left hand is doing must be completely independent of what’s happened to the right. But a little more probing in the library shows that this ability of the body to symmetricise symptoms is well-known in diseases such as rheumatoid arthritis and psoriasis, even though nobody can explain how it happens.50
(p.94) Theresa, the listening physiotherapist, turns what she’s done for me (what we’ve done together) into some lessons for other people: ‘Rehabilitation of an ulnar nerve lesion following elbow fracture: a single case study’ is given at a conference in Ireland on ‘Integrated Musculoskeletal Trauma’.51 The presentation is a nice mixture of clinical observations and quotations from me, with plenty of PowerPoint pictures of my arms and hands doing things not very well with pieces of latex and wire, and tins of baked beans. Her summary slide includes a statement and a question. The statement says that repair of a nerve can never be perfect. The question is the one that my fracture has made me puzzle over long and hard: why do they call perceiving touch and pain sensation, when you can do both and yet have no sense of having a hand? The more fundamental question here is why the models of the body on which Western medicine depends so distort the human experience of living in a body.
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