an outpouring of stories

 

If you want to hear an outpouring of stories about medicine, start a conversation about childbirth with a gathering of women or about sports injuries among men. Ask a group of doctors about their most difficult cases. Listen to any cancer survivor describe her diagnosis and treatment. Ask a child about the band aid on his knee. You’ll find a story there.

These stories serve us in several ways:

•  By narrating our experience, we organize our thoughts about it. No longer are we plagued with a vague sense of fear or dread or uncertainty. We come to understand what our fear is based upon. The pregnant woman confesses, “I thought I did something wrong to cause the bleeding.” The basketball player says, “I thought I’d never play again.” The doctor admits, “I had no idea what to do next." 

• Storytelling is an attempt to understand the cause and timing of an illness. Why me? Why this? Why now? What did I do, or fail to do, to bring this on?

• It enables us to understand the role illness plays in our lives. How it affects our family and friends, our team, our job, our finances. Our future. It all comes out.

•  It forces us to ask some difficult questions. What could I have done differently? How much pain can I bear? Who will take care of me? How long do I have to live? 

www.emaze.com

This is a big deal. Illness disrupts our lives at the same time it grounds us. It forces us take a good hard look at what we value. Shared stories of recovery and healing dispel fear and give us hope. Stories of loss deepen empathy and help us confront denial. Stories of courage and faith strengthen us for our own battles.

The importance of storytelling in medicine cannot be overestimated. Most of us are bursting with stories, about to explode with the untold narratives we stuff inside because no one invites us to tell them.
 

"One of the most valuable

things we can do to heal

one another is to listen to

each other's stories."

~Rebecca Falls~

 jan

 

 

time out for a commercial message

 

 

 

 

 

True story:

 

On my way into church yesterday I ran into a woman I've known for over thirty years. I greeted her, but she didn't respond with her usual sunny smile, so I knew something was wrong.

 

"I have to have part of my colon removed," she said. Then she proceeded to tell me her story.

 

She'd recently undergone a routine screening colonoscopy. Her last one, ten years earlier, had been clear. But, as a nurse, she was aware that she was due to have another one this year. That's what the experts recommend for low risk patients like her...of a certain age with no symptoms, and no personal or family history of colon polyps or cancer. Well, maybe she had seen one spot of bright red blood a while back, but she blamed that on a hemorrhoid...like we all do.

 

Nevertheless, she signed on for her colonoscopy. To her surprise and dismay, her doctor found eight polyps this time around. Seven of them were easily removed during the procedure, and all tested negative for cancer. But they had to leave one behind, a large, flat polyp deep in the proximal colon, near where the appendix is. These polyps are notoriously difficult to anticipate. They don't cause symptoms until after they spread. If they bleed, you don't see it. Patients are more likely to present with a profound anemia from an imperceptible leak of blood over a long, asymptomatic period of time, so they tend to present in a more advanced malignant stage. They definitely don't cause bright red rectal bleeding. Although that's what prompted my friend to proceed, it was a red herring in her case, so in a way, she lucked out...if a partial colon resection can be considered lucky. Her polyps were detected early because she followed the rules. Her prognosis is excellent. Undetected, these polyps can be killers.

 

"Once colon cancer becomes symptomatic,

nine times out of ten

it is too late."

~Kevin Richardson~



 

The message here is that colon cancer is preventable with early screening. These cancers grow slowly and seldom cause symptoms until they are fairly advanced. The goal is to detect and remove them before they become cancerous. But the guidelines for colon cancer screening are complicated:











 

 

Recommendations take into consideration your age, the presence or absence of symptoms (which can overlap with many other conditions), a family history of colon polyps or colon cancer, whether the polyp is benign, precancerous, or frankly malignant on biopsy, its size, the depth of penetration into the wall of the colon, and whether or not it has spread to nearby lymph nodes. All these factors affect risk, prognosis, and treatment. It's all pretty complicated, and as new technologies are developed, the guidelines change frequently.

 

The best advice I can offer is this:

 



 

 

Yes...talk to your doctor. Let him figure out when it's time for you to be screened and what kind of testing you should have.

 

Don't be embarrassed. Don't be shy. If you're afraid, call up a friend and go together. He/she is probably due for screening, too. Most of all...don't be stupid. The life you save may be your own.

 

For more information than you probably want or need, go to:

 

https://www.nejm.org/doi/full/10.1056/NEJMsr1714643

 

jan



 



three great saves

 





Three great saves. Three true stories:

 

1.

 

It was a busy Saturday night in the hospital when I got the call from the neurosurgeon to say he was sending in an eleven-year-old boy. The child's mother had called to say that her son had fallen in his bedroom and by the time she got to him, his speech was slurred and he couldn't keep his balance.

 

"Meet them in the ER," he told me. "Let me know what you find. I'm on my way in."

 

When a neurosurgeon sends a child in to the ER, you expect the worse. A traumatic head injury. A seizure. A brain tumor. On my way to see the child, I ran through the differential in my mind.

 

I met the boy with his parents in a small examining room off the ER. He was awake but sleepy. I asked his parents what had happened and then I approached the child to examine him. It was then that I caught a whiff of alcohol. Assuming his parents had had a few drinks with dinner, I let it go. But when I leaned in to check the child's pupils and retina, it became obvious that the boy was the one who had been drinking. That would explain his slurred speech and imbalance. I called the neurosurgeon back and explained that the emergency was not an emergency at all. Not a head injury. Not a seizure or tumor, but an intoxicated eleven-year-old who did just fine with a little hydration and time.

 

"I am human

and I make mistakes."

~Cat Power~

 

2.

 

The patient, a 42 year old woman, had been admitted weeks earlier with subacute bacterial endocarditis. Her mitral valve was severely affected and she went into heart failure. Despite the active infection, the doctors had to replace her mitral valve. They had no choice. Then she developed an arrhythmia that required a pacemaker. A week later she had a stroke followed by a seizure that left her unresponsive. She was placed on artificial ventilation. After several weeks without a glimmer of improvement, it was time to make a decision about whether or not to continue life support. We called her family in. After a painful discussion about her poor response to treatment, mounting complications, and her poor prognosis, the family decided it was time to take her off life support.

I suggested that rather than simply unplugging the ventilator, shutting off the pacemaker, and pulling IV lines, we begin by tapering and discontinuing some of her many medications. First, we weaned her off the anti-seizure meds. Then we started cutting back on narcotics and sedatives. To our amazement, she opened her eyes. She started to follow simple instructions. Within a couple of weeks she began to speak. We were forced to concede that she had been sedated by the drugs she was on to permit artificial ventilation and to suppress her seizures. Her stroke left her with a minor motor deficit, but...long story short...she eventually left the hospital and returned home to her family.

 

"Mistakes are the portals

of discovery."

~James Joyce~



 

 3.

 

The patient was admitted directly from the ER in the middle of the night with a diagnosis of acute appendicitis having presented with a 12 hour history of right lower quadrant abdominal pain. As the intern on call that night, it was my job to perform the admission history and physical, and to write orders before the surgeon could begin the operation. The patient was already in the operating room and he was ready to go. "Don't waste time," I was told.

 

So I took a quick history, checked her vital signs, and listened to her heart and lungs. Then I examined her abdomen.  She was tender deep in the right lower quadrant directly over McBurney's point--a classic finding in appendicitis--except for one thing. When I pushed in, something throbbed against my fingertips. It was painful for her as expected, but I caught my breath when I felt the pulsating mass and heard the whoosh, whoosh, whoosh of blood coursing through it. I'd seen several cases of appendicitis by that time, and trust me, the appendix does not pulsate. But a dissecting aortic aneurysm does. This was a problem. The OR wasn't prepped for this kind of procedure. The blood bank would need to be alerted, the vascular team assembled, and ICU notified. And time was critical.

Just then the chief surgeon backed through the OR doors and the nurse slipped the gloves over his hands. "Are you just about finished, doctor? We need to get started here."

As an inexperienced intern, I ventured apologetically, "I, uh--I'm not sure about this but, uh--would you mind just checking her abdomen with me? Something doesn't feel right."

The surgeon rolled his eyes and snapped off his gloves even though he would have to scrub all over again and that would take time. He placed his hands grudgingly on the patient's belly, and pushed harder than he needed to, in my opinion.

"Damn," he hissed. "Page X-ray, stat. Get the bypass team in. Alert the blood bank."

That night, I got to assist at my first AAA repair.
 

"Mistakes are the usual bridge

between inexperience and wisdom.

~Phyllis Theroux~

 



If you are a health care provider--a doctor or nurse, a first responder or a therapist of any kind--you may have made some mistakes in your career. A missed diagnosis. A botched procedure. An oversight or misperception. You may also have made a few great saves in your lifetime. Maybe you led a successful resuscitation. Perhaps you're the one they called on when no one else could get the IV started. Maybe you picked up the heart murmur everyone else missed. Perhaps something you said or did prevented someone from taking his own life. If we are willing to learn from the mistakes we make, the great saves will come.

 

"Individually we are one drop,

but together, we are an ocean."

~Ryunosuke Saloro~

 

jan



PS: Kindly disregard the funky formatting on this post. I am clueless... 

 

how to patch up an empathetic heart

 

An empathetic heart should come with a lifetime supply of Band-Aids. It will be broken again and again, patched up over and over, and sent back out to witness, embrace, and tend to suffering in the world. At least, it would if it could.

"It is both a blessing

and a curse to feel everything

so very deeply."

~David Jones~

 

True story:

 

This past weekend I was lucky enough to be able to spend a couple of days with my daughter, son-in-law, and almost-four-year-old grandson, a child with boundless energy, a fearless spirit, and an unmistakable drive for independence. Saturday was a perfect winter day--sunny and cold--so we decided to give snow tubing a try.

 

Just like this: family tubing at Blue Mountain Resort 

 

 

There, tucked in the protective curve of my daughter's arm, her young son felt no fear as we careened down the hill, spinning faster and faster until we were breathless and dizzy. At the end of every run, he would jump out of the tube, begging to go again. No fear.

Three hours later we were headed for the lodge when he momentarily lost sight of his mother in the crowd. And even though I was right there with him, an expression of absolute terror crossed his face. He cried out , "Mommy! Mommy!" until I pointed her out to him just ahead of us. And in that moment he totally relaxed, ran to her, and grabbed her hand. Safe. Certain. Happy. Which is how children should feel.

 

In that moment, though, his fear transported me to our border with Mexico, to the thousands of children who were taken away from their mothers without explanation. Hungry, tired children who wept with fear and confusion. Children who would never find their mothers in the crowd again. A single moment in my life was magnified to reflect an immense humanitarian disaster.

 

That night, after a good supper and a warm bath, we tucked the child into his soft, warm bed, only to be awakened in the middle of the night by a cry for help. "Mommy! Mommy!" My daughter bolted up the stairs to him because she could tell by the tone of his voice that something was wrong. And it was. He was sick to his stomach, and proceeded to vomit throughout the night, while she laundered his bedding and sanitized his bedroom, and finally settled into bed next to him so he felt safe. Then she sat with him the next day and offered him sips of water and soup. She did everything a mother could do to help her child feel better. Which is how it should be.

 

"Nothing you do for a child

is ever wasted."

~Garrison Keillor~

 



 That episode, though, reminded me of the refugee camps in Syria and around the world where children suffer without hope. Without end. Children who are sick and scared. Children whose mothers and fathers grieve because there is nothing they can do to comfort them, to care for them, to save them. Places where there are no Band-Aids.

 

It is unsettling to contemplate the immensity of human suffering when just one moment of terror, one outcry in the middle of the night is enough to break an empathetic heart. To connect it to all of mankind, and make it cry out for some measure of mercy. 

 

"Every cry is a prayer.

Every prayer is for mercy."

~Neo-Kabe~

 

If you are a health care provider or therapist of any kind, a caregiver, or a parent, you have an empathetic heart. A broken heart. A million Band-Aids hold you together. Maybe you needed one the day your patient died on the operating table. Maybe you slapped one on when your colleague took his own life. Perhaps you needed several of them when your son overdosed. When the dog died. When they slipped the IV into your child's arm.

"The heart will break,

  but broken, live on."

~Lord Byron~ 



Hopefully, someone showed up with Band-Aids for you. Hopefully, you will show up with a few for somebody else.

 

jan

 

 

 

 

 

 

 

 



 

 



how storytelling heals





Much of what is written about the healing power of storytelling has to do with more or less intangible, warm fuzzy concepts like finding your truth, defining your purpose, or sharing your message. It has to do with attention, affirmation, and empowerment. However that happens.

From a more scientific standpoint, we know that storytelling causes the release of hormones such as oxytocin that governs empathy and social interaction, and cortisol that is connected to the stress response. We can measure the levels of these hormones so we have proof. That's what happens.

But the biological correlates of storytelling are far more complicated than that. Take this, for example:

"The coupling between speaker–listener and listener–listener brain pairings was assessed through the use of a spatially local general linear model in which temporally shifted voxel time series in one brain are linearly summed to predict the time series of the spatially corresponding voxel in another brain. Thus for the speaker–listener coupling we have

where the weights are determined by minimizing the RMS error and are given by Here, C is the covariance matrix and is the vector of shifted voxel times series, We choose , which is large enough to capture important temporal processes while also minimizing the overall number of model parameters to maintain statistical power. We obtain similar results with ."  (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2922522/)

 

"Maybe stories are just

data with a soul."

~Brene Brown~

 

 In plain English, this means that stories have the power to heal through the process of:

• Alignment: an unconscious process that enables communication between storyteller and listener so that their brains exhibit mutual temporal, coupled response patterns that synchronize over time. In other words, they are both connected by and engaged in the story.

• Coupling: the emergence of complex behaviors that require coordination of activity between individuals. In health care this is important because this factors into whether the patient will follow directions or change unhealthy behavior. If the health care provider doesn't attend to the patient's whole story, or the patient doesn't feel he has been heard, neurolinguistic coupling can't take place. Nor can healing.

• Dialogue: the exchange of ideas and information that leads to understanding, empathy, and interaction. 
   



~Cultural Detective Blog~

The interesting thing is that this can all be visualized by scanning the brains of storytellers and listeners with a functional MRI as they interact. You can watch the gradual alignment and coupling of electrical activity in specific areas of their brains as the dialogue progresses. And then you can observe the behavioral changes that follow.

This kind of information is important if you reject the validity of anecdotal evidence and instead, cling to hard data to make your point: that storytelling directly affects brain function and, in doing so, it affects the physiology of the body. It explains how storytelling heals.

"The truth is, in order to heal

we need to tell our stories

and have them witnessed."

~Sue Monk Kidd~



If your job is to assess the cost effectiveness and clinical correlates of thorough history taking in the clinical setting, this information helps make the case for improving physician-patient interaction by embracing the importance of narrative in clinical practice.

There is no doubt that:

.

"A story is a powerful, unifying tool

that connects mankind, breaks down barriers,

and heals wounds."

~https://www.nativehope.org/media~

 

jan

how stories bring us to wisdom

  

 

To really understand a story, you have to know something about the person who is telling it.

 

“It may take a doctor

to diagnose someone’s disease,

but it takes a friend

to recognize someone’s suffering.”

~Unknown~

 

Picture this: a four-year old is enjoying an ice cream cone on a hot summer day. But the ice cream is melting faster than she can lick it off. Suddenly the whole thing just gives way and ends up a pool of sticky sweetness on the hot sidewalk. She starts to cry. She is inconsolable because her ice cream is gone.

 

If she could tell her story, she might describe how happy she was when her mother bought her the ice cream cone, and how her heart was broken when it fell to the sidewalk. She might blame herself for being careless and feel guilty about having ruined it.

 

Depending upon her personality, her mother might see it two ways. It might upset her to see her child’s disappointment and to hear her crying. Or, she might be angry because her daughter was careless with it and her money was wasted. Two different stories.

 

Her bratty brother might describe his perverse delight in her predicament.

 

Everyone would tell the story differently.

 

Likewise, patients tell their stories from different perspectives depending on the situation. This can be misleading for the physician. Some people panic at the slightest ache or pain. Some people ignore a serious problem out of fear. A good example is rectal bleeding. Everyone knows it can be a warning sign of colon cancer…but no one wants to have a colonoscopy.

 

“Fear of illness

accounts for more deaths

than illness itself.”

~#marvinthegreat~

 

Others may be in denial about their symptoms. Chest pain is blamed on indigestion when the patient is actually having a heart attack. Or heartburn is blamed on stress when the problem is an ulcer. They try to convince themselves it isn't serious.

 

Stoic patients may minimize their symptoms. My mother was a stoic woman. I called her one Sunday evening, like I did every week, and I noticed her speech was slurred. When I asked her about it she said, “Oh, I think I might have had a slight stroke a couple of days ago.” Did she call the doctor? No. She didn’t think it was severe enough to bother him about.

 

“Listening is often

the only thing needed

to help someone.”

~Unknown~

 

The medical history, then, can be misleading. To get the whole story, the physician has to listen to the patient’s story while also observing his expression and body language. It helps to know what is going on at home and at work. It takes time to explore his beliefs, his fears, and his experience of illness.

 

It helps to know the patient. It helps us know his disease.

 

 "Facts bring us to knowledge

but stories bring us to wisdom."

~Naomi Rachel Remen~

jan

how to allay fear, dispel anger, and overcome shame

 



 

I have a handful of friends whose stories I know inside and out.

"Tell us the story of the
mountain you climbed.
Your words could become a page
in someone else's survival guide."
~Morgan Harper Nichols~

One of them 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 sixteen years old...and he was only 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 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 thing is, it took years for these stories to emerge. They were shared with me little by little, over coffee, over dinner, at conferences, and on road trips. 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 nag them. Please...write for us! Tell us everything.

"Write hard and clear

about what hurts."

~Ernest Hemingway~


Why?

Because when we know someone's whole story we have a better shot at understanding who they are and how they got that way. We are able to provide meaningful and appropriate support, encouragement, and care. We know when they need space. We get a glimpse of the dark side and it doesn't scare us away.

Likewise, when someone tells us his/her story, it helps allay fear, dispel anger, and overcome shame. The process of sharing your story with others leads you out of isolation.

This is why I encourage my friends to tell the rest of us what happened. To tell us how they got through it then, 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.

 

"When you stand and share your story...

your story will heal you and

your story will heal somebody else."

~Iyanla Vanzant~

 

 

Teach us what you know. Tell us your story.

 

jan