the difference between truth and fiction

 

True story.

I used to live in the country, and I loved to walk the back roads out there. An afternoon stroll "around the block" was a good four or five-mile hike, no matter which route I took.

But there was one road that used to spook me out.

The trees and vines had overtaken a ramshackle trailer settled askew a few yards off the road.

www.2.tbo.com
 It looked something like this.

A pile of old tires spilled up against a dilapidated shed where a muddy pickup truck was parked.

www.flicker .com

You get the picture...it was the kind of place meant for stereotyping. The kind of place you'd expect to find some redneck, beer-swigging, abusive boor with his toothless hag and ragamuffin kids. Or perhaps some psycho loner with his stash of semi-automatic weapons, his shortwave radio, and a fully stocked bunker somewhere out back.

www.ar15.com

Or, on a more empathetic note...an elderly couple living in poverty who could barely afford their medication, much less the upkeep on their place. I used to cross to the other side of the road whenever I passed it. It was that spooky.

So...one fine summer day as I passed, the front door opened and out stepped the lady of the house, a fiftyish woman in a flowered house dress and fuzzy slippers (I kid you not). She waved and called me over. I'm thinking, "This is not happening!" But I crossed the road, thinking she might be sick. Maybe she needed help. She stood on the stoop, and this is what she said:

"I see you walking by every so often. Do you have any books you could bring me?"

 

True story.

 

I walked away laughing to myself. Books?? When I got home, I put together a bag of old paperbacks and castoffs...and the next time I passed the place, I put it in the mailbox.

 

 

 

Not long after that, the place went empty. Gradually bushes and vines over ran the property, and then one day everything was gone. The trailer--gone. The shed--gone. The truck and tires--gone. Today there is nothing left of it...just the woods, as though they'd never been disturbed.

 

www.flicker.com

Nothing spooky about it at all.

The end. 

 

Epilogue: I never saw the woman again. I have no idea who she was or where she ended up. And I still sometimes wonder what happened to those books. 

 

If books are made of stories, I guess stories can be made of books.

"The difference between truth and fiction is

that fiction has to make sense."

--Mark Twain--

jan

 

"hope is the last thing ever lost"

 

Two days ago, we awoke to thick, low clouds, to ground fog, and a light mist. It was a dismal, gloomy start to the day, and it discouraged me from getting a walk in...until like magic, the clouds disappeared. Suddenly we were treated to clear blue skies, sunshine, and warmth. My reluctance to get outside quickly morphed into enthusiasm. The same thing happened yesterday. It was cloudy again, windy, and twenty degrees colder than the day before...but I didn't let it discourage me. Sure enough, by the time I tied my sneakers and donned a light jacket, the sky turned blue and the sun invited me outdoors. 

It occurred to me that this is the perfect metaphor for the course of our lives. 

"The only constant in life
is change."

~Heraclitus~

One day things seem to be going along just fine. You're all caught up with the laundry, your bills are paid, and your kids are healthy and happy...and then, in a heartbeat, everything changes, the way they changed for so many this week. For the parents who lost their children to senseless gun violence in Oregon. For families who lost everything in the floods and wildfires out West. For anyone hearing the word "cancer" from their doctor for the first time. Will the sun ever shine for them again?

Perhaps.

Maybe someone will share a memory that brings a smile to the lips of the person who is grieving. Perhaps cleanup and rebuilding has already begun. Hopefully, treatment will be successful. 

"And from the midst of cheerless gloom

I passed to a bright unclouded sky."

~Emily Bronte~

Life unfolds from day to day in unexpected ways. Some we welcome. Some bring us to tears. Our efforts to sustain a modicum of hope may be all we have to get us through. Hope that things will get better. Hope that we will survive. Hope that the strength and support we need will arrive in time. Hope that the clouds will pass and sunny skies will reappear.

"Hope is the last thing ever lost."

~Italian Proverb~

This morning, the skies are clear and the sun is shining brightly,

even though rain may be in the forecast for some of you.

jan

illness, inside and out

 

Illness should be understood in terms of its effects on the patient, both inside and out.

Within, it interrupts normal physiology and function. It alters anatomy. It causes pain. Traditionally, this has been the domain of the healer: diagnosing and treating the illness or injury by asking about symptoms, examining the patient, ordering diagnostic tests, and formulating a plan of treatment. It can all be done at the bedside.

But illness also triggers a cascade of cognitive, emotional, and psychological responses. It affects the patient’s relationships, his capabilities, his expectations, and his role in the family and community. Positive mental and emotional changes have been shown to support the ability to heal. On the other hand, negativity is believed to impede recovery. Unless we take into account the patient’s sense of self when tending to his illness or injury, we may neglect one of the most important determinants of his ability to heal.

"It may take a doctor to diagnose

someone's illness, bit it takes a friend
to recognize someone's suffering."
~author unknown~

For example, when the family's breadwinner is laid off because of illness, he loses wages. It’s possible he will lose his job, so he worries how he will support his family. Fear and uncertainty aggravate the illness. His self-respect and confidence take a punch to the gut. That’s the thing that really hurts, but he won’t tell you about it unless you ask.

"To me the ideal doctor

would be a man endowed with 

profound knowledge of life and of the soul,

intuitively divining any suffering or disorder

of whatever kind,

and restoring peace by his mere presence."

~Henri Amiel~

Or perhaps your patient is a mother with young children at home. Who will take care of them while she is in the hospital? She worries about them. She feels guilty because she can’t be there for them. She may actually lie to you in hopes of being discharged from the hospital sooner, denying the pain she still has, or pretending to be stronger than she actually feels. Her narrative is misleading.

The patient’s story extends beyond the bedside. It embraces more than his illness. One person will be crippled by it while another is healed.

We can’t understand a patient’s illness unless we understand how it affects everything and everyone around him—his family and friends. His hopes, dreams, and plans for the future. We can’t hope to heal the patient until we hear his whole story.

“The doctor may learn more about the illness
from the way the patient tells the story
than from the story itself.”
~James B. Herrick~

jan

the consequences of fear and ignorance

  

I was going to try to avoid writing about anything political this week, but I couldn't help myself. This blog is about the role storytelling plays in the practice of medicine, including the stories that describe our patients' experiences and the stories we recount as health care providers. I'm afraid the narrative is about to change, though, as we witness efforts to discontinue public health programs and dismantle medical research initiatives. Meaning that people...children...will die.

"The two public health interventions

that have had the greatest impact

on the world's health are 

clean water and vaccines."

~World Health Organization~

I've been around long enough to have celebrated the triumph of vaccination against polio, make that "paralytic polio", a disease you do not want to see, treat, or God forbid, suffer. We are already witnessing an uptick in cases globally, not because the vaccine is unavailable (yet...), but because RFK spearheaded efforts to withdraw funding from Gavi (the Vaccine Alliance, or Global Alliance for Vaccines and Immunization) whose purpose it is to fund immunization programs in underserved populations around the world. Trouble is brewing.

Closer to home, disinformation has bred skepticism and fear. Parents are hesitant to provide their children with even routine vaccines that have been proven safe and effective for many years. We have already seen an upsurge of measles cases among the unvaccinated that have already claimed the lives otherwise healthy children.

Count yourself fortunate if you have never watched a young polio victim struggle to use crutches, much less fight to breathe in an iron lung. We thought those days were behind us. Now, we can't be sure.

The stories we have enjoyed for years may be changing. We may be going backwards.

"Universal vaccination may well be

the greatest success story

 in medical history."

~Michael Specter~

I can tell you the story of an otherwise healthy child who came home from school one day with a headache and a slight fever...and died the next day of meningococcal meningitis. That fast. Back in the days before we had a vaccine that would have prevented it.

I can tell you what it was like to treat a child with measles encephalitis and watch them die of a totally preventable disease or suffer its consequences for the rest of their lives.

I can tell you how hard it is to intubate an infant who is struggling to breathe with whooping cough or a toddler with epiglottitis, diseases we never see in vaccinated children anymore. 

Without a doubt, the stories we tell and those our patients tell will change given the present leadership of the Department of HHS. From triumph to heartbreak. From hope to despair. From success to defeat.

Trust me: you do not want your child, or grandchild...or ANY CHILD...to suffer or die from a preventable disease. You don't want ANYONE to die of a preventable disease because of skepticism, fear, or ignorance. If you agree with me, please make your thoughts known at:

Contact Us | HHS.gov

The US Department of Health and Human Services

Hubert H. Humphrey Building

200 Independence Ave., SW

Washington, DC 20201

1-877-696-6775

"To fear what you do not understand

is to mistake ignorance for safety."

~Ginn Hale~

when the truth is pure fiction

One of the goals in narrative medicine is to unearth the patient's whole story, including missing details that point to the correct diagnosis and lead to an effective treatment plan. These details are easy to overlook when time is short. When the health care provider is staring down the barrel of the proverbial productivity gun and is under pressure to get on with it. When his own anxiety propels him through the day. It takes time to elicit the patient's story, to understand the real source of his pain, to recognize the oscillations between identification and detachment, between truth and denial...and to act on the patient's behalf out of sincere empathy and compassion. The provider's job is tricky and difficult under the best of circumstances.

 

In addition to the productivity conundrum, there is this: patients sometimes lie. Yes, they do. They don't always mean to be misleading, but it happens.

 

"The most dangerous lies

are the ones we tell ourselves."

~Honey Sanaa~



Let's say the patient has been sitting in the waiting room for almost an hour and is running late to pick up the kids from school. When she finally gets in to see the doctor for her checkup, he says, "How have you been?" and she replies, "Fine. Things are good." This lets him off the hook. He breathes a sigh of relief. Never mind the fact that she has been exceptionally tired lately. That she gets winded carting the groceries into the house. That she feels a little lightheaded when she stands up too fast. She doesn't have time to go into all that today.

 

Never mind the fact that she looks so pale, and her blood pressure is running low. She says she feels fine, and that's all the doctor has time for today, anyway. 

 

Never mind the leukemia that already has a head start but could have been stopped in its tracks if only there had been enough time that day. Enough time for the doctor to mention her low BP, to comment on her pallor, and to ask if she was feeling tired or weak...which might have led him to order the blood count that might have saved her life.

 

"The greatest obstacle

to discovering the truth is

being convinced that you already know it."

~Ashleigh Brilliant~

 

Besides the ever-present problem of time constraints, patients may lie out of shame. They're not likely to admit to the sexual encounter that left them with a rash or discharge. They'll tell you they tripped over the dog and ended up with a broken wrist, but they won't mention that it happened after night of heavy drinking.

 

Out of a sense of guilt. They'll try to convince you that the infant with the fractured femur fell off the changing table in the split second it took to fetch a clean diaper.

 

Out of denial. They blame their chest pain on indigestion or a muscle strain even though they know better. Their cholesterol is sky high, and their BP is out of control.

 

"A diagnosis is burden enough

without being burdened by secrecy and shame."

~Jane Pauley~

 

Meaning that it can be hard to get to the truth when the patient's history is pure fiction. 



 jan

 

 



why you should have your mind blown once a day

 

Gimsoya, Norway

Hopefully, the ongoing state of affairs at home and abroad hasn't sucked your spirit completely dry, meaning that you can still appreciate beauty when you see it. If you are anything like me, you are still subject to sudden attacks of amazement, deep admiration, and even envy when you read a beautifully written narrative, or you hear a piece of music that touches your heart, or you witness an act of extraordinary kindness, despite what's going on in the news. Natural beauty, in particular, affects me deeply. I often wonder how a composer thinks to string a certain combination of chords together or conjures the orchestration and unexpected harmonies that have the power to bring a dull ache to my chest, or to transport me back in time to a treasured memory. I am also prone to envy when I read a book or story that captures my interest, changes my perspective, or engages my imagination. Anything that leaves me in awe.

"Awe is the beginning of wisdom.

Awe is the beginning of education."

~Matthew Fox~ 

The Serengeti, the Matterhorn, and the northern lights over Norway all brought me to awe. The music of Beethoven, Bach, and Mozart, as well as numerous contemporary composers like Nadama and Deuter still bring me to awe. Science and mathematics do it, too. The way the body heals itself. The intricate workings of every single living cell. The way the heart beats steadily and predictably without any effort or awareness on our part. Don't get me started on consciousness! 

"The moment you start 

watching your thoughts, 

a higher level of consciousness

becomes activated."

~Eckhart Tolle~

The beauty of all this is the mystery that surrounds it...which brings me to math. 

I don't know if I dislike math because I'm not good at it...or if I'm not good at it because I don't like it enough to work at it. (I'd much rather play with words.) Which makes physics, calculus, and especially quantum theory a mystery to me. And it puts me in awe of people who do get it.

?

The book I'm lost in now is titled, "When We Cease to Understand the World" by Benjamin Labatut. The title resonated with me. It is based on the lives and work of some of our greatest physicists and mathematicians, factual but fictionalized to make it readable. It includes stories about Karl Schwarzchild, Einstein, and Schrodinger, among others I've never heard of...and their obsession with defining the nature of reality in numbers. With unfathomable brilliance. Right up there with Bach.

The fact that we have access to the minds and works of geniuses and prodigies should give us hope. There is a lot of wisdom we can draw from...and even more to learn.

"There are things we know that we know...

there are things that we know

we don't know...

and there are things we do not know

we don't know."

~Donald Rumsfeld~

Beautiful music and artwork, literary masterpieces, and natural wonders all have the power to bring us joy, to keep us connected, and to teach us. They leave us in awe and amazement. They give us hope and invite us to explore the mysteries that make life worth living.

According to astrophysicist Neil deGrasse Tyson:

"Everyone should have their mind blown

once a day."

jan

a fork in the road to healing

There is a fork in the road along the healing path in narrative medicine. One pathway invites patients to tell the stories of their illnesses. The other beckons health care providers to share their experiences as healers. The journey for both patients and providers is similar. It embraces memory, invites reflection, provides perspective, and engages support.

The patient’s narrative recalls his symptoms. He lists the diagnostic tests that were performed, names the medications that were prescribed, and traces his journey back to health…or not. But equally important is the fact that he can tell you how the diagnosis affected him emotionally and psychologically. He may have despaired to learn he had cancer. His entire world may have spun out of orbit because of a stroke or disabling injury. How will he manage if he can’t work? How will he support his family? Who will pay the bills and mow the lawn? He dreads burdening his wife and children with his care. He wishes he could die…not a healing thought among them.

If, on the other hand, the news is good, let’s say the lump turns out to be benign, or the doctors are able to slip the stent in before the infarction occurs…the patient’s story may end on a happy note. Besides relief and gratitude, there may be some spiritual introspection. A surge in compassion and empathy. New found joy and peace. An entirely different story.

"You must find the place
inside yourself where
nothing is impossible."
~Deepak Chopra~

When the health care provider sets out on his narrative path, it takes him to the bedsides of the people he has cared for over the years. He recalls patients with interesting and unusual presentations, baffling symptoms, and resistant conditions. Amazing recoveries and remarkable courage. He re-experiences his triumphs and his defeats. He may finally admit to the uncertainty, oversights, and errors in judgement that have haunted him over the years. He can name the patients who recovered against all odds, and the ones who succumbed despite his best efforts.

"One of the most valuable things
we can do to heal one another
is to listen to each other's stories."
~Rebecca Falls~

He may finally acknowledge how hard it was to sustain his marriage and to be present for his children. He may have missed his son’s winning soccer goal at the state championship because he was tied up in the operating room, or he may have forgotten his wife’s birthday because of some committee meeting or other. A huge part of his story takes place outside of the hospital and office. 

Our stories take into account more than what happened to us, when it occurred, or how it ended. They embrace how we respond to life’s vagaries, how we interpret and process them, how we survive them, and who we become because of them.

"Telling our story doesn't merely
document who we are.
It helps make us who we are."
~Rita Charon, MD, PhD~

Which narrative path will you take?

jan