Friday, May 28, 2010

TO BE A HERO


Interesting how wisdom passes from hand to hand. Blogger Lori Hope (http://www.carepages.com/blogs/helpshurtsheals/posts) relays a wonderful piece by Marcie Beyatte (http://www.marciebeyatte.com/TDBJ/WORDS/Entries/2010/5/26_Seven_Years_Seven_%28million%29_Lessons.html) on the “seven million” lessons Marcie learned from her cancer. It’s definitely worth reading.

One of her lessons involves an increasingly prominent issue, the well-being of caregivers. “Being a caregiver is harder than being the patient,” Marcie writes. “I found this out when my husband got cancer two years after my recovery.”

My friend Randy Hill, who’s developing a support program for caregivers, has been attending meetings of people with cancer and meetings of caregivers as well. He related to me a stunning realization. “Meetings of patients are generally upbeat,” he said. “In caregivers’ meetings, though, the general atmosphere is sadness.”

His interpretation is that people who have cancer (or possibly any life-threatening illness) frame their situation differently than caregivers do. He feels that facing potential death can elevate one into a heroic perspective, while giving care can seem like only ongoing, mundane drudgery. It’s one thing to stare down The Reaper and quite another to empty the next bedpan.

His view strikes home, and it makes me wonder: if having cancer invites one to re-view one’s life, might caregiving as well? I regularly see people slide into doomful depression right after diagnosis, and then gradually evolve a positive, creative response. Can caregivers do the same? Is their function simply to work hard and support, or might it, too, rise to the archetypal level?

Patients frequently describe their caregivers as heroes. What, after all, is a hero? A Superman type, who protects those around him by obliterating the villain? Sure, but that version happens only to be a current aberration. Historically and literarily, heroes are something different. The late mythologist Joseph Campbell pointed out that in legends around the world, heroes are themselves conquered--again and again--but by greater and greater villains. The Luke Skywalkers set out on their mission confidently, but get trounced by the Darth Vaders. So they consult with the Yodas, acquire skills, and in the next encounter do better, but ultimately it’s not about winning, only expanding oneself. Any doubts, ask Joan of Arc.

So I wonder if we can work with caregivers toward reframing their role. To be the wind beneath someone’s wings is also to fly.

Wednesday, May 26, 2010

MY COJONES MADE ME DO IT


I’m back now, and feistier.

You’re probably aware that a certain percentage of babies are born prematurely, before the calculated due date. But did you know a similar number are born post-maturely?

That’s right! Some of us are born later than we should be, and during that delay their fetal brains secrete an abnormal hormone, procrastinin, which makes them late for every postnatal event. So if you’re perpetually late for everything, it’s not because of some moral failing; you’re a victim of postmature birth syndrome, or PMBS.

There, now doesn’t that make you feel better? Others of us suffer from the silent killer, Testosterone Poisoning Syndrome (“My cojones made me do it”), Pathological Niceness Disorder (“You sit right there and I’ll do the dishes. And the laundry. And raise the kids”), and a host of other entities that in sum release us from responsibilities for our own lives.

I coined a passel of these disorders a quarter-century ago and explained them on our local community radio station. Afterwards, friends would stop me on the street to ask if they were “real.” Some offered innovative diagnoses of their own. Since then, it’s gotten harder to write satire ahead of the surreal twists our culture takes. Just about every infelicitous behavior now has a medically oriented name which people take seriously.

No, I wasn’t just playing around outside marriage: I suffer from “sexual addiction.” The list of disorders goes on and on. The upcoming fifth edition of the psychiatric handbook, the Diagnostic and Statistical Manual of Mental Disorders, is likely to be twice as heavy as the current edition.

It’s a touchy subject, so I need to be clear. In no way do I want to diminish or dishonor people who are suffering from anything, whether from a “real” disease or the results of their chosen behavior. But we need to put brakes on our tendency to label ways of being in the world as “syndromes,” for then we wind up addressing them not through normal life navigation, but through expensive pharmaceuticals and arcane procedures. Worse, by convincing ourselves that our problems can be addressed only by professionals, we mystify ourselves about our own lives.

Monday, May 10, 2010

KNOW-HOW VERSUS KNOW-WHY

I’m about to disappear for a couple of weeks, on vacation. I’m “vacating,” temporarily leaving. Call it resting, relaxing, or just plain hanging out: it’s the most undervalued of therapies, effective during sickness and especially as prevention. Maybe you, like many, have said, “I don’t have time to be sick.” Ironically, that philosophy ensures gradual depletion and eventual sickness.

Frankly, we’re a work-oriented culture. Our reluctance to take it easy so saturates us that we don’t notice its presence. We commonly talk about relaxing as “kicking back,” hardly a tranquil metaphor.

The obsessive-work message is subtle but ubiquitous. Here’s one fascinating example: I learned in medical school that the function of a muscle is to contract. Well, that makes sense, doesn’t it? What else would you expect a muscle to do, spit? The plain fact is, though, that a muscle can’t contract unless it first relaxes. A muscle that only contracts is like a coin with heads and no tails. I learned a lot about muscular contraction, then, and virtually nothing about relaxation. In fact, muscle relaxation was hardly studied at all in laboratories until Eastern disciplines began to popularize it a couple of decades ago.

Old habits persist, though. Too many of us work and work without balance. As a friend from Bangalore told me, “You Westerners have a lot of know-how. Not so much know-why, though.” I plead guilty. I love physical work, and do it to excess. I can dig holes or pour concrete or hammer boards until I literally can’t move. My wife tried to set me straight on this when she said, “You think workaholics don’t like what they do. Fact is, they do like it, as much as addicts like their drug.” I try to keep that in mind when I pick up my shovel.

Thursday, May 6, 2010

GUESS WHAT? REAL LIFE ISN’T LIKE TV


Do you remember Dr. Ben Casey? Every week on early 1960s television, this chief neurosurgery resident drained the brain abscess just in time, grabbed the obscure diagnosis that eluded his smug house staff (“Phil, do you mean you didn’t even think of a metastatic pheochromocytoma?”), even found housing and jobs for his indigent patients.

Now, he was a doctor. Actually, he was heir to the honorable lineage that included Dr. Christian and Dr. Kildare, and would serve as a model for Dr. Marcus Welby and today’s hyperactive tele-physicians. These legendary characters are nothing if not problem solvers. Whatever the catastrophe, they somehow deliver heaven from the jaws of hell.

It’s fiction, though. In real life, the Seventh Cavalry hardly ever arrives to save the day. Medical practice is more like trying to hit a moving target in a dark room. We wish patients would present with clearcut, textbook symptoms so we can just cruise down our algorithm and click on the perfect remedy, but that’s an exception. The more typical patient offers a rambling, bewildering narrative that frustrates us to the point that we interrupt (after an average of eighteen seconds, according to studies) in order to nail down something, anything, tangible. It’s not that patients are poor historians; life is simply smudgier than we’d like.

Sure, heart attacks and strokes and intestinal obstructions—life-threatening physical problems—occur, and need immediate physical attention. More often, though, the patient suffers something only she can address, an existential dilemma working its way through her physiology.

When we think of “body language,” we usually conceive it as overt postures, grimaces and gestures, but it occurs at the physiologic level, too. Many organs beside the eyes know how to weep, for example. The lungs can weep, as can sinuses, the gastrointestinal tract, and the skin. Muscles everywhere know how to grip—in the neck, lower back, pelvis, intestines, arteries, and even the heart. Those who live with a great burden of stress are aware of the toll, including even structural change, that these unconscious reactions can take over time.

Several years ago, I saw “Milly,” a woman in her thirties who had a strange arthritis that migrated around her body. Determined to track this down, I examined her thoroughly, read copiously, performed over a thousand dollars worth of tests, and finally nailed down the diagnosis: palindromic rheumatism. I’d never heard of that before, yet here it was, without a doubt. Proudly, I revealed the diagnosis to Milly.

“Well, how do you treat it?”

“Mainly with painkillers and probably steroids.”

She thought a bit. “Tell me,” she said, “do you think this has anything to do with my marriage?”

My medical pride summarily crumbled. Many visits, hours of research, and a fortune in tests, and it came down to this. “What about your marriage?”

She confided in detail, and during the next visit, too. I had no idea what to do or say, so I just listened. At last she said, “Look. Look at my hands. What do you see?”

“Swollen fingers.”

“Look carefully. One finger’s normal.”

Her ring finger. Had she worn her wedding ring anywhere else, she wouldn’t have been able to remove it. There, in the office, she slid it off. She went on to get a divorce. Her symptoms utterly disappeared.

I hadn’t done anything but be a catalyst, a sort of passive lubricant for the changes that needed to occur. As much as I’d aspired to be Ben Casey, my role here wasn’t telegenic at all.

Monday, May 3, 2010

THE DIFFERENCE THAT MAKES A DIFFERENCE

A few years ago, a television station doing a story on support groups covered one of our meetings. When the story aired, the reporter introduced it with, “And now, some interesting medical news...” Behind her appeared a logo establishing the story’s category. Was the logo a graphic of two people talking? Certainly not. It was a chest x-ray. After all, how would viewers know this was a medical story if not for the technological clue?

People have come to equate healthcare with equipment, which of course gets more complex—and more expensive—daily. Physicians, who already work 50-60 hours weekly, need to devote even more time to keeping up with this assistive machinery—that is, after they’ve completed their insurance paperwork. It can make one throw up one’s hands.

Whether we’re healthier for this material progress, though, is arguable. Anthropologist Gregory Bateson habitually asked, “Is this a difference that makes a difference?” I’m not plugging the Luddite cause here, only questioning balance. And we’re wildly imbalanced because economic interests relentlessly push high-tech healthcare modalities, while low-tech is a quiet, secluded endeavor, unhawked by ads, public relations firms, or product placement.

Low-tech is just folks in contact with one another. And here’s what’s interesting: generally, the more low-tech is used, the less high-tech is necessary. As oncologist Dr. Elaine Schattner points out in an online essay this week (http://www.huffingtonpost.com/elaine-schattner/health-care-reform-doctor_b_558664.html), “…in oncology, a field I know very well, if physicians had the time to examine patients thoroughly—including the lymph nodes, liver and spleen—and did so often enough that they'd be confident in their physical examination skills, they might order fewer CT scans.”

Speaking of “healthcare reform,” this is the kind of difference that will make a difference.