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 unrelenting.
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 unbearable?
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 providers.
"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."
`REASONING SURRENDERS'
The first time you meet Collen, he appears trim and fit. Although he walks gingerly, there is no pronounced limp. However, halfway through a 30-minute interview, he has to stand in an effort to relieve part of the pressure on his back.
"Say you're a doctor and you look at me in your office and you think, `No. Not believable,'" Collen says.
In other words, no prescription drugs for you.
"But they see my artwork, and it gives them a better idea for what people like me are going through," he says. "It's like (philosopher) Blaise Pascal's quote, `All our reasoning ends in surrender to feeling.'"
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!'"
Something of an autodidact, Collen has used his own experience as a jumping-off point to research such topics, including pain tolerance - defined by the American Academy of Pain Medicine as "decreasing relief of pain with the same dosage over time."
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.
CATHARSIS THROUGH ART
Collen isn't naive enough to think his online exhibit, supported by the California Assembly of Local Art Agencies, a nonprofit arts organization, 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."
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Are people being under- or over-treated for chronic pain?
Patient advocates such as Mark Collen say the medical establishment often under-treats chronic pain. (Chronic pain is widely defined as unrelenting pain that has lasted a minimum of six months. A study published recently in The Lancet, a noted medical journal, reported that 25 percent of Americans are suffering from chronic pain.)
But pharmacological response and treatment remains a delicate and controversial subject. The Centers for Disease Control and Prevention reported that, between 1999 and 2004, the misuse of prescription opioids (such as Oxycontin, Vicodin and Methadone) were responsible for a 160 percent rise in death by accidental overdose.
And in Congressional testimony in March on prescription drug abuse, CDC epidemiologist Dr. Len Paulozzi testified that 180 million prescriptions a year are written for opiates.
"The drugs are safe and effective when used as directed, but the key is in that phrase, `as directed,'" Paulozzi said. "And what's happened is that physicians today don't have a great deal of experience. We are certainly not training in medical school for the management of long-term opioid therapy."
Despite such sobering statistics, the American Medical Association Journal of Ethics, in its January issue, published a study opining that under-treatment of chronic pain is rampant.
"The fear of creating or worsening addiction has been one of the main reasons for this irrational avoidance of an effective but admittedly `blunt instrument' in the treatment of pain," wrote Drs. Steven D. Passik of New York's Memorial Sloan-Kettering Cancer Center and Kenneth L. Kirsh of the University of Kentucky.
"For many decades, the exaggerated fear that exposure to these medications brought about addiction - and the intent to prevent that consequence - amounted to non-malfeasance gone awry."
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(c) 2008, The Sacramento Bee (Sacramento, Calif.). Distributed by Mclatchy-Tribune News Service.