WHO WILL STOP THE PAIN?

Part One:

The Silent Epidemic

One in five Canadians -- about six million people -- is living with
chronic pain of some kind. Over the next two decades, as the
population ages, that figure is expected to grow to one in three.

Sometimes, when the pain drugs don't reach her, Lous Heshusius lies on
the floor as still as a corpse. "Please," she'll whisper to herself,
"Please, let it pass."

She says there have been moments when she's imagined taking a knife
and cutting through the muscles and tissues in her shoulder and neck,
just to ease the unbearable tightness.

It has been 15 years since the car crash that nearly killed her.
Fifteen years and more than 30,000 hours of pain -- stabbing, burning
pain so intense at times she cannot think or speak. The kind of pain
that paralyzes, says the woman from Sooke, B.C.

She has no memory of the impact, no memory of being broadsided by a
car travelling 90 kilometres an hour as she pulled away from a stop
sign on a country road north of Toronto in September of 1996. No
memory of her car being rammed across the intersection and flipping
into a ditch.

When police found her unconscious and slumped in the mangled front
seat, her face bloodied from the shattered glass of the windshield she
hit when her seat belt came undone, they thought she was dead. Doctors
at the hospital told her the force of the impact was so intense that
her neck could have been broken; death could have been instant.

"Such a painless journey it would have been," Heshusius wrote in her
published memoir of a life lived in pain.

Instead, the accident sent Heshusius into a world she could not have
prepared for, a state experienced by millions of Canadians every day --
one of unrelenting, incapacitating and life-altering pain. One in five
Canadians -- roughly six million people -- is living with chronic pain
of some kind, sometimes as a result of trauma or illness, and
sometimes for no obvious reason at all. Over the next two decades,
that figure is expected to grow to one in three as the population
ages. Aging brings pain, from arthritis, from complications of
diabetes, from stroke and heart disease.

Cardiac surgery, surgery for breast cancer, caesarean sections, hip
replacements and even gallbladder removal and hernia repairs -- all can
cause persistent pain. Depending on the operation and how it's
performed, 10 to 50 per cent of patients will be left with searing
pain, sometimes years after incisions heal. Thoracotomies -- where the
chest is cut and the ribs pried open to gain access to the heart and
lungs -- carry one of the greatest risks.

While modern medicine can help people survive serious illness,
sometimes it's at the cost of great pain. Nerve damage from some
chemotherapy drugs can lead to one of the most profound pain
conditions known -- chemotherapy-induced peripheral neuropathy, a
condition that can cause numbness, tingling and pain that starts in
the hands and feet and can slowly creep up the arms and legs. Doctors
have no way to predict who will get it.

All in all, chronic pain -- back pain, head pain, neck pain, abdominal
pain, joint pain, pelvic pain, pain from fibromyalgia, pain from
irritable bowel syndrome and any pain that persists beyond six months
or the "normal" recovery time -- costs Canada an estimated $6 billion a
year in direct healthcare costs, as well as an estimated $37 billion a
year in lost productivity. That's more than cancer, heart disease and
HIV combined.

Yet chronic pain is one of the most invisible, under-treated and
disbelieved afflictions in Canada -- a country that is, ironically,
home to some of the world's leaders in pain research.

Pain is virtually ignored in discussions about health reform. Wait
times for treatment at publicly funded pain clinics in Canada average
one to three years. The chronic pain clinic at Vancouver's St. Paul's
Hospital has a 3 1/2-year wait list of about 1,300 patients. In
Calgary and Ottawa, the wait time to see a pain doctor can be a year
or longer. At the Alan Edwards Pain Management Unit at the Montreal
General Hospital, the waiting list is 700 names long.

For children in pain, the situation is equally bleak: Only a handful
of centres with specialized pain programs for children and adolescents
exist in Canada.

Doctors who treat patients living in pain say that any wait for care
beyond six months is medically unacceptable, because early
intervention can keep lives from turning into train wrecks.
Uncontrolled pain can cost people their jobs, careers, homes,
marriages, friends and sense of identity. People, including young
mothers, lose the ability to take care of their families. Constant
severe pain deadens personalities. Looking in the mirror, Heshusius
said she sometimes hardly recognizes herself. "Who is she?" she wonders.

Pain is demoralizing and isolating. It can destroy people financially.
People unable to work lose their benefits; they lose fights with
insurance companies and workers' compensation.

The instinct is to retreat, to curl up and wait for the torment to
stop. People living with chronic pain are twice as likely to suffer
major depression as people living without pain.

Yet despite the burden of suffering, pain is poorly treated in Canada.
Sometimes it is not treated at all.

"You can do a lot with what's available now, but most people don't get
it," says Dr. Catherine Bushnell, Canada Research Chair in clinical
pain and president of the Canadian Pain Society.

Experts blame the meagre training health professionals receive on
assessing and managing pain (a survey of 10 major Canadian
universities found that veterinary medicine students receive, on
average, 87 hours of mandatory training in pain, versus 16 hours, on
average, for medical students); inadequate funding for research (just
one-quarter of one per cent cent of all federal dollars for health
research in Canada go to pain); a health system that doesn't
compensate doctors for the time it takes to provide meaningful pain
care ("we take up too much time," pain patients say over and over
again), stigmatization and attitudes toward people with pain and a
strong reluctance to prescribe opioids for chronic non-cancer pain.

So patients struggle to find doctors to help them, leaving the burden
of care to fall on over-stretched pain clinics and the small number of
community doctors willing to help. People with pain describe being
treated like street addicts when they land in emergency rooms in a
pain attack so severe they can barely put one foot in front of the
other.

Chronic pain patients, "are often given the message, 'you're imagining
it. It can't be that bad. You need to get over it. There's nothing we
can do,'" says Dr. Mark Ware, director of clinical research at the
Alan Edwards Pain Management Unit.

"These kinds of things stick in a patient's mind. They are horrible
things to hear when you're facing a long-term diagnosis of a chronic
pain syndrome."

The problem is that pain is invisible. There's no blood test to
measure it. People look normal, and when there's no broken bone or
tumour, no slipped disc or joint arthritis, no "organic" problem or
obvious "pathology," the tendency is to dismiss it, to label people as
fakers or malingerers, to accuse them of seeking "secondary gains"
such as disability benefits or insurance compensation.

News stories about people who "cheat" the system; the little tolerance
society has for people who complain of pain -- all play into the idea
that chronic pain "is a bit of a muse," says Dean Tripp, associate
professor of psychology, anesthesiology and urology at Queen's
University in Kingston, Ont.

Research shows just how misguided that thinking is.

Pain kills. People with chronic pain die two to five years earlier
than those without pain. Poorly treated chronic pain can cause lasting
changes in the peripheral nerves, spinal cord and brain so that,
essentially, the body forgets how to stop hurting long after the point
where normal healing should have occurred.

The pain system becomes so wound up, explains Dr. Michael Negraeff, an
anesthesiologist and pain specialist at Vancouver General Hospital,
that normal touch hurts, "and regular pain becomes huge pain."

One Toronto woman, who spoke with Postmedia News and asked not to be
identified, has suffered electric-shock-like pain across her chest
since undergoing a quadruple bypass in 2003. She suffers from
neuropathy, or nerve pain. Her surgeon used an older procedure for
bypass that carries a 10 to 15 per cent risk of neuropathy, rather
than an alternative technique that carries a far lower risk. She woke
from surgery with excruciating pain.

"There was this enormous pressure to be tough," she says -- to hold out
taking the pain drugs until she could no longer stand the pain, even
though the evidence is mounting, including data from Canada -- that the
worse the pain control after cardiac surgery, the more likely people
are to still be in pain six, 12 and even 24 months later. Had she been
encouraged to take enough medicine to stay on top of the pain it might
never have developed into chronic pain.

She soon couldn't bear to have anything touch her chest, not even
silk. She says it felt as if a swath of her chest was on fire. Through
friends, she met theatrical costume designers who spent days designing
a bodice-like wire brace that hangs down from her shoulders and straps
to her hips, to keep her clothes away from her skin. Getting dressed
still takes hours.

Judy Kohut's pain starts in the middle of her back and then snakes up
into her neck and head. The Edmonton woman has spinal stenosis,
scoliosis, fibromyalgia and nerve pain. If you saw her seated in a
restaurant she would look perfectly normal, until she stood. She's
bent at the waist and shuffles, dragging one leg. In 2003, she started
to feel intense pain in her back, but she was working in a
communications job she loved and refused to pay attention to it, until
the day she flew home from Ottawa, lifted her luggage off the
turnstile, set it on the floor and couldn't stand up again. Her body
had seized up completely. At the hospital she had the first of three
back surgeries to deal with the worst of the ravaged discs. She's had
surgery to replace both knees and her left hip since. She used to be
five-foot-10 and is now five-footseven at most. On the worst days,
which are most days, she describes her pain as nine on a scale of 10,
even with powerful medications. Her total bo! dy is in spasm.

She says her best days are a seven. The excruciating lower back pain
is still there as well as that feeling, as if someone were sticking a
hot knife under the shoulder blade. But the fibromyalgia isn't so hot
and burning and prickly, and she has some feeling in her feet.

Once highly independent, Kohut now can't walk unaided; she needs help
getting in and out of the bath. She can't do her own hair because she
can't raise her arms; she can't do her own shopping because most days
she can't even carry a purse. She says she feels like a prisoner in
her own skin.

She runs a support group for people living with chronic pain and one
of the things that rubs raw the most are the comments, "Well, you
don't look handicapped." "What does that mean, handicapped?" Kohut
asks. "What is someone who is handicapped supposed to look like?"

She says society needs to stop turning away from people in pain. "Turn
toward us. Reach out and give us hope."

She reads a lot; she writes in journals, she searches for
information.

"I try to keep my head busy with something, so that I'm not only
thinking about the pain surrounding my body."

Prayer, massage, meditation and deep breathing. Physiotherapy and
acupuncture and electrical spinal stimulation. Anti-convulsants to
slow down the communication between pain nerves to keep them from
firing uncontrollably. Narcotics and nerve blocks and Botox and
cortisone injections. People with pain -- at least those who can afford
it or with insurance to pay for it -- try one therapy after another.
Some help; some make the pain worse. Some people spend thousands of
dollars only to realize, "This isn't working."

One 49-year-old man tried massage, acupuncture, nerve blocks and drugs
injected into the epidural space in his spine. Nothing worked for his
neck and back pain. He has finally found relief with medicinal
marijuana. He has a federal licence to possess it, but he has to use
it as if he were a criminal, keeping it a secret from his children,
his neighbours and the parents of the young children he coaches in a
minor league sport.

"I can't allow these people to find out I'm using pot for my pain," he
says. But the drug works for him. It gives him energy to do his
exercises in the morning; it gives him an appetite. It sometimes
distracts him from thinking about his pain.

There is no cure for chronic pain and none is in sight. The best
doctors can hope for with medications alone is about a 30 per cent
reduction in pain levels.

For some patients, the drugs don't even do that much, says Dr. Lori
Montgomery, medical director of the Calgary Chronic Pain Centre. As
well, the side effects -- nausea, dry mouth, overwhelming fatigue,
weight gain, foggy thinking and memory problems -- can be
intolerable.

That's why pain experts say that treatment requires a multi-pronged
approach that includes access to psychologists, rehab specialists,
physiotherapists, occupational therapists -- services that, in most
parts of the country, aren't publicly funded.

Pain researchers, doctors and patient groups across Canada want a
national pain strategy that would officially recognize chronic pain as
a disease in its own right -- not merely a symptom of something else.

"The primary-care level doesn't know how to deal with pain. So the
sophisticated tertiary clinics end up with all of them. Many of these
patients need simple blocks, simple interventions, they don't need the
special things we offer," says Dr. Yoram Shir, director of the Alan
Edwards Pain Management Unit.

"If we invested more to take care of these patients it could lead to
huge benefits for the country."

Every one of us is at risk of chronic pain, Shir says. The public, he
says, must demand change.

"People need to demand and insist on the right to be treated properly
- -- not to wait in the ER for three days, not to wait a year and a half
to see me here, because my waiting list is 700 patients long," he
says. "These are among the most horrible diseases that humankind knows."

Lous Heshusius says what's needed is a sea change in society's mindset
about pain.

"There is so much in society that works against pain relief, against
us getting help -- structural problems, political problems, funding
problems."

We live in a society that says only that which can be seen and
measured is true and valid and real, she says, "and I think that is
doing us in."

"It's why insurance companies can get away with pretending we don't
have pain. It's why my neighbour has no clue I live in pain, because
when I go out of the house, they can't 'see' anything. If I said, 'I
have cancer,' they know. But they can't understand pain."

She says she can't count the times she has heard, "But you look fine."
Or, "Can't you take some pain pills for that?"

"People have no idea what kind of lives we live," she
says.

Her old one ended in a split-second's distraction.

Her first memory of the crash is of coming to as paramedics strapped
her to a stretcher.

"It was a fantastic experience -- I felt like I was in sunlight, there
was this very wonderful light feeling, with a lot of beautiful faces
in front of me, except the faces turned out to be very worried
paramedics," says the Dutch-born Heshusius, who was a tenured, full
professor of education at Toronto's York University before her
accident, a job she says she loved.

The crash mangled her neck and vertebrae. Fifteen years later, she
still suffers sharp, shooting pain that travels from the base of her
skull, up into her head, and then through her neck into her left
shoulder and arm.

"It feels as if the tissue and the muscles are too tight," she says.
"It's like a trap and I want to take a knife and cut through it to
create space."

The pain is usually at its worst in the morning. When the pain is
intense, when it lives "somewhere between 11 and infinity" on a scale
of 10, as she describes it in her book, "It just grabs your attention
so totally that you cannot really move. It's extraordinarily hard to
find the language for it. You just move into another sphere."

During the worst years, "those horrible, dark, dark days" between 1999
and the end of 2003, she says she thought of suicide every day. She
says she tried to talk to six health-care professionals. The response
was, essentially: "We don't want to go there."

"I'm still angry with that. I'm still furious."

Were it not for her two daughters, she would not be alive today, she
says.

They were her salvation. So, too, were the hundreds of pages of jotted
notes she kept that would later form her book, Inside Chronic Pain: An
Intimate and Critical Account.

Heshusius can't teach anymore or take long trips.

"I've always been a bit of a solitary person, which serves me well,
now that I live this life in pain," she says.

"Because you find yourself alone a great deal."