Tuesday, May 13, 2008

A picture of pain - The Times Leader

A picture of pain
Chronic pain sufferer uses art to express his agony

SAM MCMANIS McClatchy Newspapers

SACRAMENTO, Calif. — Words failed Mark Collen when his doctor had
asked about his chronic pain. Strange, because Collen had always been
such a talkative guy.

But all the descriptive terms tossed out during that memorable 1997
appointment — "searing, stabbing, burning, numbing, pins-and-needles"
— could not fully express Collen's sciatic nerve pain, vicelike and

And when the doctor asked where the pain fell on a standard 0-to-10
pain scale, Collen wondered: How could a mere number quantify the

What was needed, he felt, was a tangible expression of his inner
turmoil. Maybe then his doctor would understand. Maybe then, several
years after two surgeries, he might be prescribed the right amount of
painkillers needed to live and function normally.

Chronic pain, indeed, had taken away much of the joy from Collen's
life. His marriage had ended. His career as a salesman for a major
insurance company had ended. His hope of living pain-free had ended,
as well. (He declines to discuss whether he is on disability, saying
only "I get by.")

"Half the time," Collen recalls, "I was lying in pain on my futon,
going over how many ways I could kill myself."

What he did gain from the ordeal, eventually, was an artistic outlet.
Having never taken an art class, Collen nonetheless created a stark
mixed-media piece featuring a photo of himself entombed in packing
tape, except for a single eyeball, and a poem about suicide.

He showed it to the doctor on his next visit.

"I could see her eyes welling up," Collen says. "She understood. That
did it. There was never a question in my pain doctor's mind after that."

That first foray into art as therapy has since led the 47-year-old
Sacramento, Calif., man to create a not-for-profit online gallery,

www.painexhibit.com, in which he solicits images of work from others
who are chronic pain sufferers.

In the 10 years since he's started the project, Collen has received
more than 500 examples from around the world — many poignant, all
pointed and, frankly, painful to see.

The site recently was featured in The New York Times, and the artwork
has appeared each quarter on the cover of the Journal of Pain &
Palliative Care Pharmacotherapy. Collen, who has become an outspoken
advocate for non-malignant chronic pain patients, also has had essays
and writings appear in medical journals such as The Pain Practitioner
and Practical Pain Management.

Reviewing the exhibit, Dr. William M. Lamers wrote that "the gap
between our scientific understanding of how to treat pain and the
clinical application of that knowledge remains one of the
frustrations of modern health care. ... The Pain Exhibit is a plea
for understanding and better care for those who suffer."

At the very least, says Penney Cowan, founder of the American Chronic
Pain Association, it will start a dialogue. Cowan says the Pain
Exhibit was featured at a convention for pain-management health-care

"It's a wonderful way of communicating how we feel," Cowan says.
"It's not about how well you paint or sculpt. It's how you interpret
your pain."

Collen's painful feelings began in 1995, eight days after his 35th
birthday. At work, he was bending over to put a cardboard box in the
back seat of his car when he felt immediate pain. Turns out, he had
herniated a disk, and pain radiated down his left leg.

Then came the surgeries: one to remove a portion of the bone around
the disk, another to relieve scar tissue pressing on his nerve.
Neither, he says, significantly helped ease the pain.

"It's unpredictable," he says. "Sometimes, I'll be laying in bed
reading, and all of sudden it's unbearable. (But) there is always
some level of pain."

Collen does not deny that some patients taking opioids will go to
doctors to, as a common phrase among clinicians goes, "shop for
meds." But he believes many physicians overreact and under-treat.

"They're afraid to prescribe," he says. "One (reason) is the DEA
(Drug Enforcement Agency) has prosecuted doctors — not a lot but
enough to scare them. And the second is addiction.

"But there's a big difference between physical dependence and
emotional addiction. Say you've never used drugs in your life and,
after you get injured, you're prescribed opioids. What will happen
when you stop using it is the body will have withdrawals. That's
physical dependence. Emotion addiction is, 'I want that drug!' "

Collen has used his own experience as a jumping-off point to research
topics such as pain tolerance — defined by the American Academy of
Pain Medicine as "decreasing relief of pain with the same dosage over

That led to a 2007 essay he wrote, published in the Journal of Pain &
Palliative Care Pharmacotherapy, in which he posits that patients
become afraid of their pain doctors and don't adequately express the
level of their pain.

"Fear of losing the prescription may encourage patients not to
mention that their medication is no longer working," he writes.

Collen isn't naive enough to think his online exhibit will physically
ease people's pain.

But he calls it cathartic.

Some of the images are startling in their depiction of pain in its
numerous manifestations.

In "Resonance," Susan Gofstein of Chicago painted a self-portrait of
herself on her MRI film, minus most of her face, to illustrate her
chronic facial pain. Helen Tupper of Dartmouth, Canada, expressed her
chronic muscle spasms by visualizing it as a "hot fiery ball of
pulsating pain, which is wrapped up in barbed wired."

Collen has several of his own pieces included. One is a plaster
likeness of a foot with a dozen steel blades piercing the sole.
Another, titled "Hey Doc, Have You Figured It Out Yet?," is a 10-foot-
high tower of X-rays, which Collen says represents doctors ordering
"the same test over and over again in hopes of understanding the
cause of chronic pain."

By far the most visceral is "Trapped in Hell." A red plaster face, a
rictus of pain, is impaled by three strips of rebar.

Though the visual is arresting in itself, Collen's statement about
the piece is pretty illustrative, as well:

"There are times when my pain medication stops working and the
horrible nerve pain takes over, ripping through my innocent leg. I
lay on my bed trapped, trapped by pain. I feel fear, afraid the pain
will never cease, afraid I'll go insane.

"I cry out to God, begging for mercy. What have I done to deserve
this fate? I feel like an innocent man condemned. I am trapped in a
cage of pain, a cage made of rebar. I cannot tolerate it another
second. I try a desperate escape by pushing my face through the bars,
but I can go no further. I'm trapped in hell."


No comments: