Mark Andersen: Pigeonholed and in pain

2010-12-08T23:15:00Z Mark Andersen: Pigeonholed and in painBy MARK ANDERSEN / Lincoln Journal Star JournalStar.com
December 08, 2010 11:15 pm  • 

Roger Nicholson no longer feels my pain.

Not yours.

Not even his.

Leafing through 16 years of his medical records, family letters and military judgments, only this was clear: The former Army National Guard sergeant from Beatrice felt a pop in his back while unloading a military truck in Fort Riley, Kan., in April 1994. He began to limp.

Nobody could be certain whether that was the origin of his progressively debilitating back pain or even its largest contributor. That didn't stop widespread speculation as to whether it was real, emotional orĀ  disabling.

Like me, others viewed Roger's pain through their own back pain experiences. At age 26, I bent to pick up a pencil and didn't stand straight for six weeks, and it probably resulted from an earlier construction accident.

Over the years, an expanding cast of doctors began looking more at the growing speculation about Roger's pain rather than at Roger himself.

The records show he was no stranger to doctors and hospitals. Joyce Perry, his sister, points to years of blood tests showing abnormally elevated white cells -- an indicator of inflammation, maybe of an infection but possibly cancer.

Yet Roger continued to receive directions for enemas, dietetic fiber and laxatives to counter chronic constipation, which all seemed to assume was a side effect of his prescription painkillers.

When a Beatrice emergency room doctor found Roger's tumor during a rectal exam in April, Perry said, the cancer already had spread to at least a dozen places throughout his body.

I never spoke with Roger about his pains. When I met him at an Omaha hospital in November, he looked like a Holocaust victim and whispered, "I'm tired."

Roger died Nov. 19, 11 days after his 50th birthday.

Medical reporters learn to avoid writing many stories about back pain. There's too much he said/she said, too much explanation of inadequate diagnostic tools, limited treatment efficacy.

There's also the complex mental health issues related to pain: addiction, depression and chronic pain syndrome -- more personal filters people used in viewing Roger.

Cancer stories also have pitfalls. Years of writing about cancer have left me thankful I have no responsibility for detecting it. Even its straightforward aspects contain complexities.

But Roger's story stands apart as a cautionary tale on a number of fronts. He became pegged as a problem, suspected as a shirker, his pains frozen and assumed unchanging.

After his injury in 1994, Roger had taken medications that masked his pain before he admitted to a full recovery. His admission to recovery later allowed the military to cast doubt on the cause. The military pointed to Roger's employer, and it pointed back. Roger became trapped in no man's land.

Roger, meanwhile, became depressed, anxious, irritable. He failed repeatedly to quit smoking. His actions fit those of someone with chronic pain syndrome but also of someone in pain, in debt and terribly frustrated.

As the pain grew worse, his ability to work declined and then disappeared.

He tried surgery. It didn't work. He became uninsured and uninsurable, in the practical sense of being unable to afford it. Emergency rooms became his care providers.

He wore down. Every trip to the doctor resulted in more advice to swallow milk of magnesia. They must be right.

Roger died while he was in the two-year waiting period between qualifying for Social Security disability payments and becoming eligible for Medicare.

Perry sees multiple lessons in Roger's death.

* Ask for your medical records. Check their accuracy.

* Repeal the two-year waiting period between Social Security disability and Medicare eligibility.

* Tread carefully when admitting to back pain recovery.

* Be wary of those who see stereotypes instead of patients.

* Specialists must communicate questionable test results even when they don't pertain to their areas of expertise.

* People need someone to coordinate their care.

Like a lot of people touched by cancer, Perry has begun raising funds for cancer research, spreading the word of cancer screenings.

Hers is a different chronic pain, still related to her brother's.

"My heart is broken," she says. "I don't want him to die for nothing."

Reach Mark Andersen at mandersen@journalstar.com or call 402-473-7238.

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