by Tim Pears
Clients usually dream of themselves as possessing all their limbs. Getting out of bed at night, those who have lost a lower limb quite often forget their loss, and fall over.
I’d been told of the circumstances of Owen’s accident. It was no wonder that he was shut down, closed off. He had other issues. But it’s my job to concentrate on occupational therapy: emotional or psychological therapy is between the client and counsellor. The boundaries that are in place have to be respected, otherwise things get confused and none of us are able to do our particular jobs properly. That doesn’t mean that if Owen had started talking I wouldn’t have listened. I would have. That’s part of my job as well. But he didn’t. He never said a word about the accident.
I understand Owen declined to continue seeing the counsellor after their third or fourth session.
Each prosthetic device is bespoke, made for the individual client. There are two types of artificial upper limb, or terminal device: the hand and the hook, either of which is secured to a plastic socket that encases the residium.
Most clients are keen to replace their lost hand with a replica, of which there are two sorts: a passive, fixed hand or an active hand with a grasping mechanism that moves the index and middle fingers, and the thumb, towards each other, while the fourth and fifth fingers remain fixed.
An active hand is commonly operated myoelectrically: the prosthetic socket has two electrodes which connect with flexor and extensor muscles in the residium. When the wearer consciously contracts the appropriate muscle, the electrode transmits the microvoltage generated by the muscle to a small motor that enables the hand mechanism to open or close the fingers. Sensors in the fingers stop them grasping objects too tightly.
Hands are laminates made from glass-reinforced plastic and acrylic resin. They are covered with a flexible ‘glove’ that matches the hair colour and skin tone of the client’s other, real hand. A cheap PVC glove may cost as little as £80, while a high-definition, ultrarealistic one made of silicon can cost £3,000 – 5,000 for a whole leg or an arm.
People often wear rings, wristwatches or other jewellery on their artificial hand. One of my clients has found it so difficult to come to terms with his amputation that he sleeps with his artificial arm on.
It was at first impossible to determine what kind of prosthesis Owen wanted. As I’ve said, he showed no interest in his future. But then things changed. He came to his fourth meeting with me – he was now out of hospital, back at home – and brightly asked me to show him the hooks again.
Hooks are lighter than other types of device; they’re tougher and more durable. Most amputees, however, care very much what other people think. They resent and are upset by people noticing and staring at their artificial limb, their disability. A very few clients don’t give a damn, and care only about the functionality of their prosthesis. I knew I should be wary of Owen’s leap from depressive lack of interest to a gung-ho attitude: if this was evidence merely of denial then it would not bode well for recovery. My reservations, however, were overcome as Owen spoke of his determination to resume as active a life as possible. He worked as a self-employed gardener, and together we looked into the array of gardening tools modified for disabled people; he spoke of his young son and his wish to do everything with and for him that any father could. The only thing he didn’t want to consider was motor vehicle adaptation for disability: Owen said he had no wish ever to drive a car again.
Hooks generally operate by a steel cable attached, via metal links in a cuff running the length of the arm, to a trunk harness. The client puts tension on the cable by flexing his shoulder; the cable pulls and operates to either open or close the hook’s two steel or aluminium digits. These digits can act either like a finger and oppositional thumb or like two adjacent fingers. Their grasp force is determined by rubber bands encircling the base.
Because the tips of the fingers of a hook are small, the client can see the object to be grasped more easily than with the thicker fingers of a prosthetic hand. They’re also much cheaper than bespoke hands, and although our priority is to provide whatever an individual client needs, he or she may well reject an illchosen prosthesis and simply not wear it. If it was one of the most expensive types, then we’ve clearly wasted money. And we were already at that time working to a tightly controlled budget at the Centre.
Owen took to his hook with relish. He subjected it to all kinds of tests, challenging it and himself to do pretty well everything he could before the accident. Within a short space of time he was able to operate tools, though for other reasons was unable to return to work. He also liked gimmicky aspects of having it: holding a cigarette between the claws, or trying to juggle with soft balls. He was always making jokes.
‘Sorry to keep you waiting,’ I said once, when the previous appointment had run over.
‘No problem,’ Owen said. ‘Having a good chat I was with the other cybermen out there.’
A proportion of clients – particularly men – make light of their condition with such flippancy, but Owen was intelligent. He understood, for example, that I must have heard all such cracks many times before, and he’d add an ironic touch. He once greeted me as he came into my office by raising his hook and saying, ‘Can you hear the clock ticking, Peter?’
Now I used to look younger than my age, and with my short hair I could be described as boyish. And most actors who play the role of Peter Pan are boyish women, aren’t they? So Owen was making the almost obligatory such prosthesis-wearer’s reference to himself as Captain Hook, but playing with it to include me. And the question itself referred not only to the clock swallowed by the crocodile, who you’ll remember was after Hook, but also perhaps to time that was after me. How long would I remain a boyish, young-looking woman?
Perhaps Owen was also flirting, in a mild way.
I became aware, however, of two possibly contradictory aspects of Owen’s behaviour. He made out he didn’t care what people thought, making jokes at his own expense, yet one always felt that he was hiding something – which indeed he was: the loss of his hand was as nothing compared to his greater loss. I was never sure, to be honest, whether the rehabilitation with which I assisted him was also helping him come to terms with his grief, or rather offering him a peculiar form of denial.
Such was the speed of Owen’s recovery that I stopped seeing him after three months. When he telephoned the Centre a further six months later, however, to book an appointment with me, I was not surprised. The pattern was a common one.
The persistence of sensation in and awareness of limbs after they have been amputated has long been known. A French surgeon wrote of the phenomenon in the sixteenth century. Admiral Lord Nelson lost his right arm in 1797, and thereafter felt the fingers of his absent hand digging into his palm. Pondering this survival of the hand’s spirit after its physical loss, Nelson decided it was direct evidence for the existence of the soul.
During the American Civil War thousands of wounded soldiers developed gangrene and had their infected limbs sawn off in field tents. A Philadelphian physician, Silas Weir Mitchell, later worked with many of these veterans of the war who retained the ‘sensory ghosts’ of their lost arms or legs. Weir Mitchell coined the term ‘phantom limb’.
For most of the twentieth century the phenomenon remained mysterious. Explanations ranged from a patient’s wish to have his or her limb back inducing the phantom in their imagination, to inflammation of nerve endings in the stump. In 1887 the eminent psychologist William James conducted the first survey of phantom limb amputees and found that ‘many patients say they can hardly tell whether they feel or fancy the limb’. He also wrote, in an article ‘The Consciousness of Lost Limbs’, that phantom limb sensation tells us absolutely nothing which can practically be of use to us – except, he believed, the approach of storms.
Nowadays it’s generally agreed that the causes are complex and to be found in the neurology of the brain. Parts of the body, including limbs, are mapped on to the cerebral cortex, an
d when a limb is lost the corresponding area of the map appears to adjust to receive signals from another part of the body, but the person feels the sensation as coming from the lost limb.
Women who’ve had a radical mastectomy have phantom breasts. Men who’ve suffered a carcinoma of the penis and had it amputated have experienced phantom erections. One patient who’d had his appendix taken out suffered the pain of phantom appendicitis. He refused to believe that the surgeon had removed it.
Owen came into my office. ‘You’ve got to help me. My hand,’ he said, holding up his hook where the hand had been. ‘It’s killing me.’
I was shocked by the state that Owen was in. He smelled of tobacco and alcohol.
I assured Owen that there was nothing unusual in what was happening to him. I had him sit down, fetched a cup of tea and a biscuit, gave him time to settle, before asking him to describe the pain for me.
‘It changes,’ he said. ‘Like burning, see, my hand’s in flames.’ He held it up, as if I might see the conflagration. ‘It tingles, like pins and needles. Then there’s shooting pains, like, up and down the nerves from the wrist to the tips of my fingers.’
‘How often do these pains occur?’ I asked.
Owen looked at me as if to ask why I might imagine he’d come to see me. ‘All the time,’ he said. ‘It doesn’t ever stop.’
‘Almost every amputee experiences phantom sensation,’ according to Gustav Rubin, MD, FACS, ‘but statistically only 5 to 10 per cent have varying degrees of phantom pain.’ According to Jack W. Tsao MD, DPhil, ‘Phantom limb pain occurs in at least 90 per cent of limb amputees.’ Steven King, MD, MS believes that ‘as many as 50 to 80 per cent of patients who undergo amputation report experiencing pain in the missing body part’. In this country, the Pain Relief Foundation, based in Liverpool, reckons that 75 per cent of amputees develop phantom pain. At the East Midlands Rehabilitation Centre we ask all our clients about their personal experience of phantom sensation: the anecdotal evidence is that 80 per cent experience phantom sensations, of whom 75 per cent (i.e. 60 per cent of the total) suffer pain.
I’ve enumerated these conflicting figures in order to indicate not only the lack of scientific agreement on the matter but also the subjectivity of the phenomenon.
I tried to ask Owen how his family were, his job, his marriage. It was clear that there were other issues. But he was uninterested in anything except the symptoms.
‘Stabbing pains,’ he said. ‘Like a knife, or then a skewer, piercing and twisting in my flesh. The flesh that isn’t there.’ His descriptions were vivid, and I wrote them down. ‘Then this raking pain,’ he said. ‘Like cheesewire, it is, running up my fingers. The feeling changes. But the pain, see, it stays the same.’
I asked him whether he felt like someone was inflicting this pain upon him.
‘No,’ he said. ‘It’s doing it. My hand is hurting itself. My hand is killing me. And I can’t stop it.’
We discussed the various treatments available. It’s a truism in medicine that when there are many ways to treat a condition, none of them is much good: an effective treatment soon becomes the sole method used. Most treatments for phantom limb pain available to our clients were shots in the dark which had appeared by chance to alleviate symptoms for some sufferers; we knew – and still know – so little about the neurological mysteries of the brain. The typical human brain contains over one hundred billion neurons. Each neuron is able to make contact with thousands of other neurons at points called synapses. It’s been calculated that the number of potential brain states – the number of permutations and combinations of activity that are theoretically possible – inside one person’s head exceeds the number of elementary particles in the universe.
What we now know – which is a good deal more, thanks to increased research and to magnetic resonance imaging (MRI) and other types of brain scan, than we knew the few years ago that I worked with Owen – is that it is through the complex working of the sensory and motor neural pathways, the reorganisation of the ‘mapping’ of the body on the cortex and the neural plasticity of the brain that phantom limb sensations occur.
So Owen began what would be a long and, for him, increasingly pointless itinerary. Our doctor began with prescription drugs (painkillers like ibuprofen and paracetamol have little or no effect on phantom limb pain). The antidepressant amitriptyline helps some sufferers, but caused Owen only the unwelcome side effects of a dry mouth, constipation and nausea. We moved on to anticonvulsant drugs carbamazepine (developed to treat epilepsy, it occasionally alleviates other nervous system disorders and nerve pain) and gabapentin, but again these gave no relief and only negative side effects: drowsiness, a rash on his good arm.
I told Owen of various complementary therapies, or what are sometimes referred to as psychologically based modalities, that seemed to help certain patients. Owen went away and tried them all: acupuncture, reflexology, biofeedback, hypnosis, with practitioners around Birmingham. I’m not sure how he paid for these treatments, to be honest. He had little work during this period, and he gave me to understand that he was no longer living in the marital home, though without offering further detail. Suffice to say that none of these other methods seemed to help, although to be fair I’m not sure Owen gave any of them more than one session.
I showed Owen how to massage and to gently percuss the stump. We also used TENS, transcutaneous electrical nerve stimulation, which involves placing electrodes on the stump to cause a tingling sensation, and reduces the pain for a proportion of sufferers.
None of these treatments helped Owen. I grew increasingly despondent on his behalf, as well as my own. Although at least these methods weren’t destructive. In the past, treatments have included cutting the stump back further, cutting the nerves to the stump, cutting the roots of the nerves near the spinal cord, chasing the pain deeper into the poor patient’s body, cutting the nerve pathways in the spinal cord itself and even cutting out parts of the brain.
It’s difficult to imagine being in constant pain. It’s easier to empathise with emotional pain than with physical suffering. But I’ve worked with a number of clients who lived with it and I understand how miserable, how debilitating it can be.
V.S. Ramachandran was a world-renowned brain researcher who a short time before Owen had his accident applied himself to the question of phantom limb sensation and pain. He speculated on the problem of patients whose phantom limb was paralysed. ‘What if,’ Ramachandran wondered, ‘the patient could send a message to her phantom arm and every time she did so she got back a visual signal that it was indeed obeying her command and moving? Could we trick her eyes into “seeing” a phantom?’
It occurred to him that virtual reality could be used: a computer might create the illusion that an arm was restored. The cost of such technology, however, would exhaust his team’s entire research budget. Ramachandran came up instead with a low-tech alternative: mirrors.
Owen was the first client with whom I employed mirror box therapy. The pair of us may well have been the first in this country, after one of our technicians constructed a box from a description in Ramachandran’s newly published research paper.
The pain in Owen’s phantom hand had been increasingly fixed in recent weeks, his hand contorted in a clenched, agonising spasm. Today, however, things were if anything worse: ‘My nails are digging into my palm,’ he said. ‘I swear there must be blood.’ He was by this stage, I should add, understandably sceptical of any progress. But Owen was also clearly making a great effort to hold himself together: I could smell alcohol on his breath, but he was clean, his clothes were always clean and pressed.
The box was of strong card covered in black material, and was separated into two, shoebox-sized compartments. The dividing wall had a mirror on one side – in Owen’s case, the left. The right side of the box – where Owen would place his residium – had a lid placed upon it, the other side remained open. There were two holes at the front of the box. Having removed his hook, Owen
inserted his residium – and, so to speak, phantom hand – through the right-hand hole, where it would remain hidden from view. Then he placed his good left arm through the hole on the left side. I explained what we were going to do. Owen smiled in a sardonic way I’d come to recognise, particular to shy, clever people.
‘We’re going to use magic now, are we?’ he said, and then, as if speaking about me to someone else in the room, ‘The occupational illusionist steps forward.’ It struck me that this was really my, our, last chance.
Owen could now see his good left arm and, instead of the hidden residium, the reflection of the left arm, which created the illusion of being able to see two complete hands, left and right. I asked him to make his good hand mimic the posture of his phantom. Sure enough, he clenched it tight, grimacing, digging his fingernails into his palm. It now looked to him as if he were looking at two intact hands, the fingers on both bunching, squeezing hard into themselves. Then I asked him to slowly, very slowly, unclench his good left hand. He began to do so. For a while there was silence. I watched Owen: he was gazing at his hands – his good left hand and its reflection, both of which were unclenching – with mounting intensity.
‘Oh my God,’ Owen said, as his hands opened out. ‘Jesus wept.’ He stared at his hands and gradually flexed individual fingers. ‘Sweet Mary, Mother of God.’ Owen was literally open-mouthed in amazement. ‘It’s working,’ he said. ‘I don’t believe it, but it’s working, see? My hand’s stopped hurting. It’s doing what the other one does.’
It remains the most privileged moment of my career so far. Dr Ramachandran’s invention was indeed magical, and I was able to witness its effect. We continued the session. Using the mirror, Owen was able to persuade his phantom hand to mimic whatever he did with his good hand. The pain stopped. If he removed his hands from the box, however, or closed his eyes, the pain returned.
