Phantom pain, experienced in missing limbs, tortures amputees and puzzles scientists. Srinath Perur cycles round Cambodia with a man who treats it with mirrors.
One of the few Khmer words Stephen Sumner knows is chhue. It means ‘pain’, and it’s something Cambodian people know a lot about from their three-decade-long civil war. Stephen, 53, is a brawny Canadian with an ebullient, even boisterous, manner. This is his third time here in as many years. He rides around on a longtail bicycle with a stack of lightweight mirrors behind the saddle, going to villages, hospitals and physical rehabilitation centres looking for people who have lost their limbs.
Just as the pain of war lingers long after it is over, so an amputee’s pain can persist long after the limb has gone. It can be harrowing and difficult to treat with medication or surgery. Stephen helps people deal with their phantom pain, and he does it with mirrors.
We’re in Spean Tomneap village in the Battambang province of north-western Cambodia – the most heavily mined region in one of the most heavily mined countries in the world. We’ve driven up along a mud road lined by fields and houses surrounded by tangled greenery. Stephen is perched on the landing near the staircase of a weathered wooden house on stilts. Chickens scurry about. A few onlookers gather.
In front of Stephen on an upturned pail sits Ven Phath, a soft-spoken, middle-aged father of five. His left trouser leg is rolled up to reveal a stump below the knee, the result of stepping on a mine in 1983. A plasticky prosthetic leg lies beside him.
Ven Phath still experiences pain in his missing foot, and Stephen is showing him how to position a mirror against the inside of his left leg, so the reflection of the right makes it look like both are still intact. “Look. Move. Imagine,” Stephen instructs through an interpreter.
After a couple of minutes of watching his virtual left foot moving, as if revving an imaginary accelerator, Ven Phath smiles and looks up. He says he feels better already. “Tell him,” Stephen says to the interpreter, “if you do this twice a day, ten minutes per session, for five weeks, then chhub chhue.” Pain stop.
“Rock and roll saved my life,” Stephen likes to say. On a balmy June evening in 2004, he was riding a scooter down a quiet country road in Tuscany when a motorist crashed into him and flung him off. Stephen has no recollection of the impact, but tyre tracks were found at the site and an anonymous phone call was placed to the Italian police about a man having gone down at Pian del Lago, on the outskirts of Siena.
The police didn’t follow it up, and the area was inhabited mostly by shepherds, who tended to turn in early. When Stephen was finally found by a shepherd’s nephew – returning home from band practice – he had been lying in a field for four-and-a-half hours. He only vaguely remembers feeling mud at the base of his skull, and finding it strange that he was so cold despite it being summer.
Stephen was taken to a Siena hospital with broken ribs and collarbone, a crushed arm and leg. The intensive care doctor on duty happened to be one of Stephen’s English students – but she didn’t recognise him until he was cleaned up. When he emerged from coma five days later, she was holding his hand. “Don’t look down,” she said. “You’ve lost something.” Stephen’s left leg had been amputated six inches above the knee. The doctors managed to save his arm, piecing it together with two metal plates and 28 screws.
As Stephen recuperated in hospital, he knew the leg was gone, and received regular, gruesome visual reminders when the stump was cleaned and drained.
Yet still, he felt the leg.
It began in his dreams: he recalls a particularly vivid one in which he was lying on his back on a wooden cart, his left leg visible till just above the knee. The rest of the leg was hanging down through a gap in the slats, swinging in time to the lurching of the cart. As he moved through an arid landscape, Stephen began to worry about rocks striking his foot.
Then the missing leg began to make its presence felt in Stephen’s waking hours. Though he perceived it as having some movement, it was usually bent backwards at the knee. At one point, he asked the doctors if a hole could be cut in the hospital bed so his ‘leg’ could hang free.
During his third week in hospital, Stephen experienced an episode of pain in his phantom leg – although ‘pain’ turns out to be a wholly inadequate word for what he describes: excruciatingly clenched toes, jolts that he likens to being shocked by a cattle prod, writhing so violent that his head was banging against the metal sides of the hospital bed. Stephen was left in tears after the bout.
A doctor had reassured him that he wouldn’t feel any phantom pain. “You lied to me,” Stephen told him, but the doctor said they were just twinges caused by his body adjusting to change, and that they would go away. “They didn’t go away at all,” Stephen says. He returned to Canada, went through physiotherapy, began wearing a prosthetic leg and resumed his life. But the pain returned at intervals, sometimes not letting up for days at a time. “Everything was good,” he says. “But my leg that’s not there was killing me.”
The vivid sensation of a missing limb is experienced by almost everyone who has had a limb amputated. Lord Nelson, the naval commander who lost his right arm in battle, declared that the phantom sensations in his missing right arm were proof of the existence of a soul. Today we needn’t take recourse to the mystical, since we know that the brain holds maps of the body that can be independent of the body parts it represents.
In his book Phantoms in the Brain, the neuroscientist Dr V S Ramachandran describes a woman born without arms who reported having phantom hands, which she used to gesticulate when she spoke. Other parts of the body have been known to come in phantom versions too: women who have undergone mastectomies report phantom breasts; people whose bladders have been removed still feel the strong urge to go; men who have undergone penectomies report phantom erections. One night, years after his leg was gone, Stephen woke up at 4am, swung his phantom leg off the bed, and crashed to the floor on his stump, necessitating a bloody trip to hospital. Even today, ten years after his amputation, he can feel a sore he had on his heel from a cycling shoe.
Phantom limbs might be a strange, even occasionally reassuring, phenomenon if they didn’t hurt so much. Somewhere between 50 and 80 per cent of all amputees complain of pain in their phantom limbs. In the past, a few doctors believed phantom limbs were a form of wishful thinking on the part of amputees, and that pain in the missing limb had to be psychological in origin. But most believed the pain was caused by damaged nerves near the stump. So they tried to treat phantom pain by shortening the stump, which sometimes gave relief, but seldom for long.
Then, in the early 1990s, Dr Ramachandran and his colleagues at the University of California, San Diego, conducted simple experiments with amputees that changed the understanding of phantom limbs and sensations. When they stroked the left side of the face of a young man who had recently lost his left arm, he felt sensations not only on his face but also on his phantom hand.
They already knew that the brain’s cortex has superimposed on it a virtual map of the body corresponding to sensory inputs from different parts – and that that the face’s representation on this map is adjacent to the hand’s. Could the young man’s phantom sensations be the result of sensory inputs from his face ‘invading’ the now-deprived region of the cortex that mapped to his missing hand?
Brain imaging confirmed this was the case. Other researchers found that these rewired inputs might be activating neural pain pathways for the missing hand, or at least generating ‘junk’ signals that were interpreted by the brain as a range of sensations – including pain.
It was possible, too, that when signals sent to move the missing hand didn’t lead to any corresponding visual or sensory confirmation of the movement, this dissonance was perceived as pain. The brain is known to emphasise visual feedback over other types – which may also be the reason why passengers get carsick more often than drivers. (When a passenger reads in a car moving along a curvy road, the balance sensors in the inner ear report motion that differs from what the eyes are seeing, and the dissonance is thought to be expressed as nausea. Whereas for the driver, the balance sensors in the ears, the spatial sensors in the body and what the eyes report are all in reassuring agreement.)
Dr Ramachandran and his group wondered if visual feedback of the phantom limb’s movement might help relieve pain in it. They put together what they called the ‘mirror box’ – a simple but ingenious contraption that hid the stump while allowing a reflection of the intact limb to be superimposed over the phantom limb. Now, if the amputee moved the intact and phantom limbs in sync, the brain could ‘see’ the phantom limb move.
The first amputee to try the mirror box reported being able to move his phantom limb for the first time in over a decade, and he felt immediate relief from pain. Subsequent users too found they could manage their phantom pain using the box.
Surgery and medication have been found to be only slightly or not at all effective when dealing with phantom pain. Stephen knew this, and he tried to will his phantom pain away: “Optimism. Mind over matter. I thought I could beat it.” But it kept coming back, and it kept getting worse. “Then I tried to drink it to death, which was costly and messy in every conceivable sense, plus totally ineffective.”
In 2008, Stephen was working as a property manager in south Baja, Mexico, when he had a particularly agonising bout of phantom pain. “I was not presentable for 72 hours,” he says. He was aware of mirror therapy from having looked online for treatments, and he decided to give it a try. He got into his truck and drove two-and-a-half hours to the nearest Home Depot to buy a mirror. He tried it right there in the parking lot, and in five minutes the pain was gone.
Stephen used the mirror for two weeks, then stopped because the pain had not returned. About a year and a half later, he felt the pain again, and this time he stayed the course for the full five weeks. He hasn’t had phantom pain for over four years. “It’s gone now,” he says. “It’s gone because I treated myself with a mirror.”
Asked to list the jobs he’s held, Stephen comes up with more than 20. He’s been a sailor on a commercial fishing boat, an English teacher in Italy and Saudi Arabia, a model, a screenwriter (he co-wrote the script for a German feature film about his own life, called Phantomschmerz) and an actor (involutedly playing body double for the actor portraying him in the film). He’s done competitive cycling, been in construction, demonstrated cookware at a departmental store, been “the pool guy” in Mexico and been a flight logistics officer in Afghanistan.
In the autumn of 2010, Stephen was living in a basement apartment in Vancouver when it struck him that his calling might be mirror therapy. He’d go where there were amputees in pain, give them a mirror and teach them how to use it. Cambodia was his first destination because it had an inordinately high number of amputees, and it was small and flat, which was important because Stephen was planning to bicycle with his mirrors.
And so, more than three years later, on the first day of 2014, we meet at the entrance to the rather run-down Paris Hotel in Battambang city. Stephen arrives on his bicycle, and grins as he walks towards me with hand outstretched. He’s a big, strong man who might pass off as Steven Seagal if he had darker hair and was capable of a sterner mien.
His gait is somewhat lopsided – the result, I later learn, of an experimental, low-cost prosthetic knee he’s testing, and the fact that this knee is tuned for cycling not walking. It is visible just below the hem of his shorts, continuing downward as a single steel pylon, without the cosmetic covering that makes prosthetics look like natural legs. This stands out even in a country with such a high proportion of amputees. This is partly by design: the success of his work depends on other “amps” – as he affectionately calls them – accepting him as one of their own. The cycling, too, is part of winning their trust: “It’s salesmanship. It impresses people that I roll up on a bicycle.”
I witness this bonding the next morning outside the Regional Physical Rehabilitation Centre run by the International Committee of the Red Cross (ICRC). About a dozen people are gathered in the space outside a small shop – playing cards, knitting. Stephen, who seems twice the size of most people here, walks into their midst like a giant in a particularly amiable mood. “Whose leg is that?” he asks loudly, pointing at a detached prosthetic. He sits down on a bench next to another amp, grabs the man’s rudimentary, footless prosthetic and lifts it up to examine it. He smells the splintered peg at its end and recoils, only half in mock disgust. The man is overjoyed (and probably a little drunk), and he grabs Stephen’s pylon.
An empty wheelchair is parked at the entrance to the centre, near scattered footwear and an ICRC-issued leg with a flip-flop on its foot. (Red Cross legs are designed with a gap between first and second toes for flip-flops.) “Whose wheelchair is this?” Stephen asks. It belongs to a young woman in a pink skirt who’s playing cards. “Why can’t you walk like everyone else?” Stephen chides her. She giggles. One of the men who speaks a little English says, “She’s just lazy.”
The Red Cross centre at Battambang fits prostheses and conducts rehabilitation free of charge to all amputees who come here. When Stephen first visited, the manager told him none of their amputees suffered from phantom pain. According to Stephen, phantom pain denial is common in Cambodia: “Nobody wants to be thought crazy.”
Telling them his own story often helps. Stephen says he asked to speak to the amps at the ICRC centre, and 44 of them gathered in a room. Though the manager was sceptical, he agreed to translate. Through him, Stephen told the amps about his own accident. “I told them that ten years ago I was hit, and for four years I suffered the most excruciating pain.” And then he told them how he cured himself. “Now, how many of you have phantom limb pain?” he asked. Thirty-seven out of the 44 raised their hands. Stephen conducted a mirror therapy workshop for the centre’s therapists, and left behind mirrors for them to use.
In his last two trips to Cambodia, Stephen has distributed around 600 mirrors. These are lightweight mirrors of his own design, made for him in Phnom Penh. They come in two sizes, for leg and arm amputees, and are made of an acrylic sheet taped over a silvered layer pasted on a rectangle of plastic. (Stephen originally considered tin and glass mirrors, but rejected them because of their weight and potential to injure people who could do without further injury.) Some of the mirrors went to individual amps, and some went to organisations like the ICRC or the Trauma Care Foundation.
The amps in parts of Battambang province tend to be former Khmer Rouge soldiers, though many fought on different sides of the conflict at different times. When Stephen first learned that some of the people he was treating had fought for the Khmer Rouge, he found himself in a moral quandary about coming all this way “to help the bad guys”. But then he thought, “You know what? Pain is pain.”
Stephen’s most satisfying day as a mirror therapist came in March 2012. He was doing a workshop with the Catholic charity Caritas at Samlout village, an 80 km ride from Battambang past palms, paddy fields, lotus ponds and houses with spirit shrines in their yards. He arrived and began treating one amp. And then: “I look behind me and there are amputees coming from all directions.” He estimates he treated 30 people in that one memorable day, almost all of them former Khmer Rouge soldiers.
Though an atheist himself, one of Stephen’s favourite collaborators is the Apostolic Prefecture of Battambang. The prefect is a Spanish Jesuit priest known, for his many years of work among amputees, as the Bishop of the Wheelchairs. It can be hard for amputees to find acceptance and employment in regular village life, so the prefecture has set up communities populated entirely by amputees and their families. A volunteer drives us one morning to Ratanak Mondol, where there’s one such community.
We pass signs marking areas where mines have been cleared, signs where mines are still being cleared, and grisly hoardings warning of the dire consequences of playing with a mine. The Cambodian army, the Vietnamese army and the Khmer Rouge are estimated between them to have laid around 10 million mines in the country, which is about two mines for every three Cambodians. The mines can be Chinese, Russian, US or Vietnamese in make, reflecting the complex geopolitics that have played out here. In the more than 30 years since the war, only around half are estimated to have been recovered.
In Cambodia, landmines and unexploded ordnance killed around 20,000 people and injured 44,000 more between 1979 and 2011. Despite public information drives and demining programmes, it is still not unheard of for farmers to step on anti-personnel mines in the fields. Here in Ratanak Mondol, a tractor detonated an anti-tank mine in 2012, killing seven members of a family. Stephen says the hardest sight for him is an arm amputee: usually, it means a child has tried to play with a mine, or that the amp was trying to salvage scraps of metal to sell from it.
The prefecture’s community is on a plain surrounded by low hills, with no other settlement in sight. Eight families, each with one or more amputees, live here. Each has a patch of land to farm and a bamboo-and-wood stilt house. The elevation of the stilt house is protection against floods that are common in the monsoon; for the rest of the year, the cool space under the house is its main living area.
From beneath one of the houses, four children aged four to six spill out into the yard. The eldest gets out a bicycle and scissors it perilously round the house, with a screeching younger sibling on the rear saddle. A bright heap of corncobs dries in the sun. The children’s grandfather, in his 50s, is shovelling in a dry, ploughed-up field.
Only when he comes closer does it become evident that one of his legs is a prosthetic. Then a young man named Untac appears. It sounds like any other Cambodian name to us, but the volunteer from the prefecture tells us he’s named after the United Nations Transitional Authority in Cambodia, the peacekeeping force that entered the country in 1992.
The community’s schoolteacher is a woman of around 30. Her class has 16 children between three and six, who sing a Khmer song complete with actions to welcome us. One of the teacher’s legs is a prosthetic, and she learns from Stephen how to use a mirror.
A couple of kilometres away, we visit a woman named Jian with close-cropped white hair, who has lost both her legs close to her hips. Her son is an amputee too. She rolls up on her wheelchair and slides off onto the platform of her bamboo hut to welcome us. She’s fine except for an eye that hurts, she tells the volunteer, flashing a betel-red smile.
Stephen has tried to treat phantom pain in bilateral amputees by having small-built people sit in the amp’s lap and move their legs. While this might sound like a long shot, the brain does appear easily fooled into adopting limbs as its own. Once, Stephen ‘sprains’ his prosthetic’s ankle and, to fix it, whips up the leg the wrong way so the sole of his left shoe is in front of his face. I almost howl in pain even though it’s only a prosthetic leg – and it’s not even mine.
Over breakfast at a café in Battambang city, I ask Stephen what phantom pain feels like. “It’s electric,” he says, “like this” – and jerks so violently that the heavy table we’re sitting at rises a couple of inches and a glass of water topples over. “There’s also burning and crushing, but the worst is the itching. I could kill someone.”
The most important thing to understand about phantom limb pain, he says, is that “It’s not in the head, it’s in the limb.” But he also feels there’s a psychosomatic component to its being relieved by mirror therapy. “When I finally tried mirror therapy on myself,” he explains, “it almost had to work. I mean, I needed something.”;
There isn’t consensus among neuroscientists, doctors and therapists about the mechanism behind phantom limb pain, and how – or even if – mirror therapy addresses it. For the last 20 years or so, it has been widely thought that phantom limb pain is mainly a consequence of ‘central maladaptive reorganisation’: changes in and around the missing limb’s corresponding patch of the cortex. According to this theory, phantom pain follows intruding sensory inputs from areas of the cortex that are next to the deprived area representing the missing limb.
In 2013, however, neuroscientist Dr Tamar Makin of the University of Oxford and her colleagues published results that questioned this understanding. The maladaptive reorganisation idea had previously been supported by looking for the intrusion it implied, for instance from the area of the cortex representing the face to the adjacent area representing the hand. Dr Makin took a different approach, looking at the hand area in the cortex that was supposedly being encroached upon.
She found that when amputees moved their phantom hands, as some can, the representation of the hand in the cortex lit up on a brain scan, seemingly well-preserved. This was contrary to the accepted notion that the missing hand’s piece of cortex wasn’t getting any sensory inputs. Further, the more the reported phantom pain, the better the missing hand’s representation was preserved. This brings up the possibility that phantom limb pain may somehow be involved in maintaining the brain’s representation of missing limbs.
Though Dr Makin’s work did not directly address the question, she speculated in an email interview that the main cause of phantom limb pain is ‘junk’ inputs from peripheral nerves near the stump itself. If that were the case – the standard objection to this theory goes – then treatment near the stump should cure phantom limb pain, but it usually doesn’t. Dr Makin argues that the effect of an amputation is felt not only at the endings of nerves but also in their cell bodies, close to the spine. So it’s not possible to simply ‘shut down’ those peripheral nerves by localised treatment near the stump.
Dr Makin is sceptical of mirror therapy – “I don’t believe in magic,” she says – and feels that the relief felt by many amputees is probably explained by the placebo effect. If mirror therapy does any more than that, she suggests, it would be by increasing normal inputs to the parts of the brain associated with the missing limb, thus ‘diluting’ junk inputs.
In contrast, Dr Herta Flor, a neuroscientist at the University of Heidelberg, says of mirror therapy: “It definitely works, though not in all patients. It works by providing visual feedback to the brain about a functional arm rather than a missing limb, and this changes the central maladaptive reorganisation back to normal.” Dr Flor and her colleagues were the first, in 1995, to report neuroimaging studies that linked phantom pain to central sensory reorganisation in the cortex. According to her, the central versus peripheral debate is something of a battle of straw men because the two are not mutually exclusive: computer modelling predicts that aberrant input from the periphery can lead to central changes. She says, “I personally believe that both – peripheral input and central changes – contribute to phantom limb pain.”
Several controlled trials of mirror therapy have shown it works better than placebo for treating phantom pain, paralysis and complex regional pain syndrome. But a 2011 meta-analysis found some of the studies to be of poor quality and could not reach a definite conclusion about the efficacy of mirror therapy.
“Patients are complicated and nothing works for everybody,” says Dr Eric Altschuler of the New Jersey Medical School, Rutgers University, and a collaborator of Dr Ramachandran. In his experience, there is more than one kind of phantom pain, a distinction that’s not often taken into account in trials. He says, “The mirror works best for immobile or clenched phantoms. It doesn’t necessarily work for burning pain.” Even so, he adds, “the mirror is the only effective treatment”. As for the cause of phantom pain, he feels that reorganisation in the brain is behind it.
When he teaches mirror therapy, Stephen offers a simplified explanation of the brain reorganisation theory. Pointing to his head, he says, “You have a commander here that controls the body.” Many of the people he treats have been soldiers, and they are familiar with talk of commanders and maps.
“The commander has a map of the whole body. When the map doesn’t match the body, the commander panics and you feel pain. This mirror is to trick the commander into thinking the leg still exists, so he stops panicking and the pain goes away.”
From personal experience and from working with hundreds of amputees, Stephen has no doubt that the therapy helps those with phantom pain. In that light, he isn’t overly affected by neuroscience debates. “I don’t have too much time for party-crashers,” he says. “I got amps to see.”
Whatever the science of it, there’s something marvellously loopy about a one-legged man on a bicycle riding into villages with a bunch of mirrors. I set out with Stephen early one morning after a cup of thick, strong coffee sweetened with condensed milk. We’re riding to Samlout.
An hour after we’ve started, Stephen drifts across the road to stop near a dilapidated temple. Bun Thoeun, 59, works under a tree here as a bicycle mechanic. He fought for the Khmer Rouge from 1979 to 1983, when he lost his leg. Then he spent ten years in an international relief camp on the Thai border, where he learned some English. He’s delighted to see Stephen, and swings over surprisingly quickly on his one good leg and a crutch. Stephen’s bike doesn’t really need air, but Bun Thoeun insists it does.
A little beyond Samlout is the rehabilitation workshop run by the Trauma Care Foundation. It’s run almost entirely by amputees, who make wheelchairs, crutches, walkers and prosthetics for other amps. If it weren’t for this workshop, those who live here would have to go to the ICRC centre at Battambang to get prostheses fitted or modified. Given the cost of going there, and the lost earnings, many choose to get by on crutches or crude prostheses of their own fashioning. The workshop’s funding is due to run out later this year, as the foundation moves on to other conflict zones.
Seven or eight people whom Stephen treated on his previous visit have gathered. One says he had pain in his phantom foot but feels much better now after using the mirror. Another used to be able to tell the coming of rain from a clenching near his stump, but not any more. “For how many of you did the pain disappear?” Stephen asks. Almost all present raise their hands, and there’s clapping in the workshop.
Stephen had trained one of the men here to be a mirror therapist, and left him a stack of mirrors. Now he holds a refresher class, using a whiteboard to write down how often to use the mirror. It’s best, he emphasises, to recruit an amputee’s spouse or child to remind the amp to use the mirror every day for five weeks. “I could stay here in Battambang all my life and I’d never run out of amps,” Stephen says. But he will soon move on to other amps in other places – Laos and northern Sri Lanka on this trip.
Even where Stephen has trained people and left mirrors, clinics have sometimes been slow to use them. At the ICRC centre in Battambang, he had to visit again, locate his mirrors (atop a storage locker), wipe off the dust and exhort people to use them. But his persistence is paying dividends – last year he gave a workshop in Battambang for an international panel of Red Cross therapists working in various parts of the world. He’s set to do another soon.
One reason for the slow embrace of mirror therapy in the field may be the whiff of scepticism that still surrounds it. As well as the doubts from some neuroscientists, Stephen routinely has doctors and therapists telling him, “Well, it’s not scientific” – simply because mirror therapy looks too simple.
“I am an above-knee amp. I cured myself with a mirror,” Stephen counters. “I challenge someone in a white lab coat who has never been anywhere where it hurts to tell me otherwise.”
He also thinks there is a systemic lack of enthusiasm about mirror therapy because there’s no money to be made from it. “It would be much better,” he says wryly, “to have a clinical frequent flyer with an escalating OxyContin habit. Works for all parties except the poor amp.”
Stephen has been resistant to steady employment all his life. To pay his way as a mirror therapist, he has worked temporary jobs in Canada, saving up for the mirrors and the travel expenses. But he’s exhausted now, and doesn’t know how much longer he can keep this up.
One evening, after a couple of beers, the tiredness and frustration bubble briefly to the surface. “I can’t believe no one else is doing this,” Stephen says to me, pounding the table with his fist. “It’s super-effective. I’d have thought there would be thousands of people riding around with mirrors, but there are not… What is wrong with people?”