Landed (6 page)

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.

The next day we had another session, with the same results. ‘I feel like one of the Marx Brothers, you know?' Owen said, smiling. ‘Groucho Marx, and his reflection?' I nodded, though
I didn't really know what he was talking about, until I happened to watch the film
Duck Soup
with my children some while later, with its wonderful mirror scene. But I guessed at the time that as the pain diminished so Owen was rediscovering his sense of humour.

Afterwards, I gave Owen the mirror box to take home with him. He proceeded to use it whenever he was in pain, half a dozen times a day. The relief would continue after he stopped using it, for varying lengths of time. He occasionally rang me up to tell me how well things were going or to express disappointment that he was unable to get rid of the pain for good: however long relief lasted – hours, a day – the pain always reasserted itself in the end.

The last time I saw Owen was a year or so later. A Thursday afternoon in March, about a quarter past three. I was driving along Chester Road. The day had been a wet one. It had only just stopped raining, and although there were still black clouds on the right-hand side of the sky the sun had come out on the other. The light was dramatic: it was as if everything to one's right was a giant stage, lit up for performance against a thunderous backdrop.

I caught sight of two figures on the right-hand side of the pavement up ahead, striding along. One was Owen. In his hook he held the handle of a spade, whose shaft rested on his shoulder. A boy, his son, I presume, walked beside him, holding his father's left hand. The boy carried some small tool, a trowel, I think, in his left hand. Unlike other dishevelled pedestrians around them, Owen's and his son's clothes were dry. The two of them strode along in the light that comes after a storm.

 

The mirror box was an extraordinarily simple therapeutic tool which had profound implications for our understanding of how
the brain adapts to the loss of a limb, and how phantom limb pain occurs and can be controlled. At the Centre we're now, in partnership with researchers at Manchester University, at the stage of moving on into the realm of technology that Dr Ramachandran first envisioned: computer graphics imaging. Mirror box therapy did not cure phantom limb pain for good, but we believe that it was a vital step towards that eventual aim.

The Burrows

T
he first time he saw them it happened by chance, after dusk, one warm June evening.

It was two summers after Owen's long stay on the hill. He'd been back a few times since, increasingly useful, with an appetite for work, and stamina, fortitude. Becoming a countryman: less comfortable indoors than out; no more wish than his grandfather to return to the homestead with light fading around him. Eyes dilating in the twilight, and Grandma's dimly lit cottage was too bright, the men forced to blink like owls as they stepped inside.

Owen was pulling thistles in the pasture furthest down away from the farm towards the Malt House. He'd volunteered to clear a few when his grandfather limped inside for tea, knowing it would please the old man, wanting to stay out. Daylight like food you craved more of, greedy for the last dregs.

The heads of the thistles were still tight, purple; they had to be got now. Later the flower heads would open and a breeze scatter the down, benevolent fairy-like flurries of it, drifting across the hillside, carrying their evil seeds. Creeping thistle was the exception: it spread through its roots, extending underground. ‘Can't beat that bastard,' Grandpa admitted. Fortunately rare in these parts. The air had been damp and drizzly, the ground was soft, so long as he didn't yank but gave a gradual tug to the weed its roots yielded. Owen laid the stringy carcasses out on the grass to perish and wilt. He understood by now the interconnecting chains of species essential to each other,
the intricate interdependency of life forms on the crust of this earth, but there were some species whose value was obscure. Thistles were one. Wasps another. Colt's foot. Mosquitoes.