Almost 15 years ago, a motorbike accident in Italy left Stephen Sumner with an amputated left leg and a strange, debilitating condition known as phantom limb pain.
That condition, the 58-year-old told CTVNews.ca, soon became âthe worst aspect of my entire life.â
âI was just getting destroyed by it,â Sumner said via telephone from his home in Vancouver. âI was very literally suicidal at a certain point.â
Sumner said he tried -- and failed -- to mollify the constant and excruciating pain with an admixture of alcohol and stoicism.
âI was just trying to mind over matter it,â he said. âIt just wasnât working.â
That continued for years until in a bout of particularly unbearable agony, Sumner went online and discovered mirror therapy: a treatment in which an amputee uses a mirror to reflect a remaining limb, essentially tricking their brain into thinking that that an amputated arm or leg is still there.
âI felt, âOh my god, itâs there again!â -- I felt better,â Sumner recalled of his first mirror session. âItâs now been eight years and Iâve been almost totally pain-free.â
The therapy also helped Sumner -- who has worked as everything from an English teacher to a bicycle salesman to a longshoreman -- find his calling in life.
âI would say from significant experience that⌠amputees are faced with almost boundless hardships,â he said. âA lot of these people feel that theyâve been abandoned by everything and everyone.â
Wanting to share this âlife-changingâ treatment, Sumner has since taken across Asia, Africa and the Middle East where he gets on a cargo bike laden with custom-built acrylic mirrors to search out others suffering from phantom limb pain. So far, heâs delivered well over 2,000 mirrors to fellow amputees.
âIâm almost like a missionary, if you will,â Sumner said. âI feel that Iâm bringing something to somebody thatâs very, very important.â
STEPHENâS STORY
When asked to describe what phantom limb pain feels like, Sumner screams over the phone.
âThatâs a reflection of whatâs commonly referred to as âelectric shock pain,â which is the worst style of phantom limb pain,â Sumner said.
There are also sensations that he refers to as crushing, cramping and burning. Pain events, Sumner said, are cyclical and can last for days -- and nothing, not even pharmaceuticals, can make them go away.
âIf youâre experiencing the crushing or the cramping, or never mind the electrical shock style of pain, youâre not sleeping, youâre not eating, you hate your girlfriend, you hate your friends, you hate your family, you canât work, you canât go out in public,â he said. âItâs that bad.â
Sumner first shared mirror therapy on a 2011 bicycle trip through Cambodia. The small Southeast Asian country has the inglorious distinctions of being the second most landmine-riddled country in the world as well as having the most amputees per capita -- legacies of a series of bloody and protracted conflicts that started in the 1960s with the American war in neighbouring Vietnam and ended only with a UN-backed civil war peace deal in the 1990s. Sumner has been back to the country numerous times since.
âWith almost everyone, basically their eyes flutter and they go, âOh my god, it feels like I have that arm back! It feels like I have that leg back!â he said. âI get one or two crabby ex-Khmer Rouge soldiers, but beyond that, itâs been resoundingly positive.â
Sumner explains mirror therapy like this: you simply have to sit with a mirror positioned in such a way that you only see a whole limb being reflected where an amputated limb used to be. And then you meditate, perhaps trying to move the phantom limb, or perhaps just contemplating the image of your whole self until you enter a relaxed state.
âThereâs a lot of positive thought involved,â Sumner said.
In cases where someone has two arms or legs missing, Sumner will recruit a young relative or volunteer to sit in that personsâ lap to provide the reflection. And wherever Sumner goes -- whether that be Laos, Ethiopia or Lebanon -- he leaves extra mirrors at clinics and hospitals while teaching others how to share this therapy. He also offers a guarantee of sorts: spend 10 minutes in front of your mirror twice a day for a total of five weeks, âand then you can reasonably expect that your pain will be, if not gone, then it will be radically diminished and that you more than likely wonât have to repeat the treatment at all.â
âThey might have been living with this agony on a daily basis for 35 or 40 or 45 years in some cases,â Sumner said. âThis is life-changing stuff.â
MIRROR THERAPY AT A GLANCE
Mirror therapy was pioneered in the 1990s by neuroscientist Dr. V.S. Ramachandran and his colleagues at the University of California, San Diego.
While it has anecdotally proven to be effective, on a scientific level, the therapy remains poorly understood. Still, it -- and similar virtual reality-based therapies -- are even being used in places like Canada.
Dr. Amanda Lee Mayo is a physiatrist who subspecializes in amputee rehabilitation at Torontoâs Sunnybrook Health Sciences Centre. Mayo calls mirror therapy her clinicâs âmost common non-pharmaceutical treatmentâ for phantom limb pain.
âAlmost all adult amputees, after they have an amputation, will experience phantom limb pain or sensations,â Mayo said.
For most, Mayo adds, that pain will decrease over time.
âBut there are some patients that have a chronic debilitating phantom limb pain that will persist,â she said.
According to Mayo, her patients describe their phantom limb with âclassic nerve pain characteristicsâ such as âburning, numbness and tingling (and) electric shocks.â
âWhen you have an amputation, the nerves are still there, right?â Mayo explained. âSo when you lose your leg, they cut the nerves, but the nerves are still sending signals up your spinal cord into your brain, and your brain is still thinking that the footâs there⌠So it will be sending pain signals that can either present in the residual limb or sort of shoot and you get this phantom limb sensation or pain.â
Mirror therapy, Mayo says, works by both âretraining the brain to what the new norm (of) the body isâ and creating a distraction âfrom the painful sensations that (patients are) experiencing.â
âWeâre playing along with the motor-sensory cortex in the brain and trying to sort of rewire it through guided motor imagery and mirror therapy,â she said. âSo (in) a lot of mirror therapy, theyâll be sort of relaxing their intact limb on the other side, because a lot of the sensation that patients describe is like their foot is cramping or their fists are clenched. The therapist will (then) sort of work the patient through with their intact limb to relax (their) hand or move it in a relaxing way.â
And while it does not necessarily work for everyone -- especially patients who are intellectually disabled or have multiple amputations -- it remains an important tool at her amputee rehabilitation clinic.
âItâs always worth a try to see if it will help,â Mayo said. âI think anything is good for pain management, especially when weâre looking at non-pharmaceutical options⌠A lot of these patients get inappropriately prescribed opioids for phantom pain.â
Mayo calls Sumnerâs work âfantastic.â
ON THE ROAD
Sumner is currently sharing mirror therapy with fellow amputees in northern Sri Lanka -- a region that was racked by a vicious civil war between 1983 and 2009 -- as part of a months-long journey that began in November and will also take him and his cargo bike to countries like Myanmar and Vietnam.
âI ride up into the provinces and search out more hospitals, more clinics and even more villages,â he said. â(Iâll) ride through some of the most beautiful country on earth.â
Although he has received some financial support from local NGOs and groups like the International Committee of the Red Cross, he funds his trips largely through private donations and his own scanty savings.
âIâve never ever had more than two nickels to rub together, it seems,â Sumner said. âIâm just a guy with mirrors whoâs an amputee that doesnât suffer from phantom pain.â
Still, Sumner persists and will continue delivering mirrors on this trip until his funds run out and he is forced to return home to Vancouver.
You can follow Sumnerâs journeys through his and website, , where he also blogs and accepts donations. Sumnerâs custom-built acrylic mirrors cost between $10 and $25 to produce, and he almost always gets them locally made.
âIn my mind, I canât believe the fact that Iâm the only guy in the world that does what I do,â he said. âIn my mind, there should be an army of me out there.â