tell me your story; show me your wounds

 

I called my best friend last night. We don’t see one another very often anymore, but we do stay in touch. After we catch up on all the things that keep us busy, the conversation usually turns to friends and family. Here are a couple of the stories we shared this week:

•      My friend described the plight of a woman who has undergone eight operations in a futile effort to eliminate a recurring MRSA infection post-total knee replacement.
•      She expressed her concern for a neighbor in her seventies who took a tumble and broke her hip, and then, a few weeks later, fell again and suffered a subdural.
•      We discussed the plight of a woman from her church who is losing her battle against metastatic breast cancer.
•       I told her that a friend's daughter, recently married, had suffered a miscarriage over the weekend.

…not one happy moment among them.

The thing is these occurrences are not uncommon. We encounter them every day. In fact, stories like these are so commonplace we are tempted to dismiss their gravity and to overlook the emotional devastation that remains in their aftermath.

“Under the look of fatigue,
there is always another story.
There is more than meets the eye.”
~W H Auden~

But what if we knew those details? Are we interested, empathetic, compassionate, or simply curious enough to ask? Is there more to the story?

•      The woman with the recurring MRSA will be going off IV antibiotics in a week or two. Every time she does, the infection recurs…seven times, so far. If it happens this time, she will be staring down the barrel at an amputation…
•      Several months earlier, the neighbor who fell and her elderly husband became foster parents to their grandson who was 9 months old at the time…
•      The woman with the metastatic breast cancer had entered hospice care. The question that arose for my friend was whether or not it was too late to give her a call. What could she possibly say?
•      The young woman, who suffered the miscarriage at home, described herself as a “monster” for having unknowingly flushed her baby down the toilet.

There is always more to a story than first meets the eye. It pays to go deeper. To draw out the most painful details. How else will we know what a person needs? As healthcare providers and caretakers, how will we know what to do to help? What to say? How can we help them heal?

"Everyone you meet is fighting a battle
you know nothing about.
Be kind.
Always."
~various attributions~

Last night I spent an hour on the phone with another a friend whose autobiography should be titled, “Anything That Can Go Wrong, Will…” Her story is one of multiple oversights, erroneous assumptions, and mistreatment during a recent hospitalization that would give Stephen King nightmares, I kid you not. Untreated hypertension and untreated pain complicated by complacent nursing care. Today, she thanked me just for listening.

 

It turns out that narrative in medicine is alive and well in every community, in every neighborhood, and around every kitchen table.

What is your story?

“Tell me your story,
show me your wounds,
and I’ll show you what Love sees
when Love looks at you.
Hand me the pieces,
broken and bruised,
and I’ll show you what Love sees
when Love sees you.”
~from “When Love Sees You”~
~lyrics by Mac Powell~

jan

three questions you should ask yourself

 

I have a handful of friends whose stories I know inside out. I may have heard them over a cup of coffee or a glass of good red wine, on a hike in the woods, or during a stroll on the beach. Getting them to write their stories down is a different task. I nag them to do it because there are people everywhere who need to hear from them. Someone who has recently been diagnosed with cancer needs to hear from someone who has been through it. It helps to know that they share the same feelings, that the diagnosis was devastating, the treatment grueling, and the recovery painstaking. They need to hear from someone who has been through it that there is hope. That a cure is possible. That victory is glorious no matter what it takes.

Among my friends is a woman who held her brother in her arms as his life slipped away after someone broadsided the car she was driving at an intersection. She was just eighteen years old. He was twelve.

Another woman lost three of her six children. A train took one down when he was eleven years old. That tragedy drove her second son to suicide. As if that weren’t enough, another one succumbed to an oppositional-defiant form of childhood leukemia.

Another friend of mine hasn’t seen her daughter, her only child, in over ten years…not since the day her ex absconded with the child to a war-torn country in the Middle East following a bitter divorce.

I could go on.

The point is it took a long time for these stories to emerge. They were shared with me little by little, at odd moments, over a period of years. There are still some details my friends can’t bear to reveal, some for which there are no words. No way to describe the horrifying moment. To process its meaning. To live on in spite of it.

Which is why I continue to plead with them. Please…write it down for us. Tell us everything.

Why?

Because when we know someone’s story, we have a better shot at understanding who they are and what they’ve been through. We’re able to provide them with meaningful and appropriate support, encouragement, and care. We know when they need space. We get a glimpse into the dark side of their lives, and it doesn’t scare us.

Likewise, when someone tells their story, it helps allay their fear, dispel the anger they feel, and overcome the shame that has silenced them. The process of sharing your story with someone you trust leads you out of isolation.

"Tell us the story of the mountain you climbed.

Your words could become a page

in someone else's survival guide."

~Morgan Harper Nichols~

This why I encourage my friends to tell the rest of us what happened to them. To tell us how they got through it and how they go on today. How they get up in the morning and go to work. How they ever manage a smile. What gives them strength, or hope, or solace. What they still need from us.

The stories they could tell would be full of wisdom and insight. Even humor. They have something to teach all of us. To encourage us. To help us heal. If only they would begin.

I encourage them even though I know how hard it can be to get words on the page. To stay focused on the work at hand while sitting alone, in silence for long periods of time. To return to it again and again even though you sometimes feel like giving up. Perhaps the story is too painful to revisit. Too achingly sad to put into words. So confusing it doesn’t make sense.

If this resonates with you, please begin writing. Do it for the rest of us. Open a new document or run out and get yourself a journal that strikes you as welcoming and forgiving. Go ahead. Put your name on it.

Still not convinced you should share your story? If you are keeping an untold narrative under lock and key, or a chapter tucked away somewhere in your heart, or a tender memory smoldering out of sight, ask yourself these three questions:

     1. What do I know?

Perhaps you lost a child. Maybe it happened because of a miscarriage no one saw coming. Perhaps someone convinced you to have an abortion when you were too young to understand what was happening…and now you can’t forgive yourself. Or maybe you spent an inestimable number of sleepless nights at your child’s bedside while he fought for his life, to no avail. You know everything there is to know about suffering. Everything the rest of us need to know.

"Write hard and clear

about what hurts."

~Ernest Hemingway~

     2. Who else needs to know it?

If you survived, someone else needs to know how you managed to pull it off. Someone, somewhere needs to know that healing is possible. It might be the father who suffers a disabling injury, or the parent of a child with special needs, or the woman who is hearing the word “cancer” for the first time. When you express your anguish, it gives them permission to admit theirs. The story of your journey may be a wellspring of hope for others. Your strength may be the only thing that keeps them standing under the weight of the burden they are carrying

     3. How will I tell them?

One painful word at a time. One affirmation after another. Honestly, openly, and courageously.

If you still can’t get started, try writing something else first. Maybe a poem or a letter.  Perhaps you should run out for some new paints and a fresh white canvas. Or raise your voice in song. Or put on some music and dance. There is more than one way to tell a story.

How will you tell yours?

When will you begin?

"When you stand and share your story...

your story will heal you and

your story will heal somebody else."

~Iyanla Vanzant~

jan

 

 

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