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

    

stuck? try this

 

Are you keeping an untold story in lock down? A painful chapter stored somewhere in your heart under lock and key? A tender memory moldering out of sight?

Why?

Have the voices been messing with you? The voices that insist you have nothing important to say? That you have no talent for this kind of thing? That no one wants to hear what you have to say anyway?

Perhaps your story is too painful to revisit. Too achingly sad to put into words. Too confusing to make sense of...so you haven't started.

“You are so brave and quiet,
I forget that you are suffering.”
~Ernest Hemingway~

If this resonates with you, you MUST begin writing. Do it for the rest of us. Pick up any old scrap of paper and get started. Or open a blank document and begin. Or run out and get yourself a journal that strikes you as welcoming and forgiving. Go now! We’ll wait.

As Maya Angelou reminds us:

“There is no greater agony
than bearing an untold story inside you.”
~Maya Angelou~

Can’t do it? Try this. 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. Maybe you spent an inestimable number of sleepless nights at your child’s bedside praying for his survival to no avail. You know everything there is to know about suffering.

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.

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 their own burden. The expression of your anguish gives them permission to admit theirs.

3.    How will I tell them?

One painful word at a time. One affirmation after another. Honestly. Openly. Courageously.

“Write hard and clear
about what hurts.”
~Ernest Hemingway~

Still can’t do it? Try writing a poem or a letter. Perhaps instead 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. More than one way to heal.

jan

 

 

why me? why this? why now?

I had one of those "Why me? Why this? Why now?" moments this week when I passed a dog who apparently took offense as I walked by and decided to teach me a lesson. The bite wasn't bad, but it meant limping home to clean things up, a trip to the drugstore to get a tetanus booster, and a ten-day course of antibiotics. Meaning I couldn't take care of the yardwork as I had planned this weekend. And my leg may still look a little funky when we leave for vacation next week. 

"I am not what happened to me."

~Carl Jung~

We have probably all had these moments. I'm sure my brother did when he suffered the stroke that landed him in a long-term care facility. For the rest of his life. 

I'm sure my best friend wanted answers when her daughter succumbed after a long battle against ALS a few weeks ago. 

"Little by little, we let go of loss...

but never love."

~Attribution Unknown~

Anyone who has been affected by the recent onslaught of severe storms, wildfires, and earthquakes must be wondering the same thing. Anyone who has unexpectedly lost their job or their home. The injured and the sick. Victims of war. Not to mention the thousands of legal immigrants who will lose their Temporary Protected Status today and face the imminent threat of deportation at the whim of our so-called leaders. I could go on.

Why me? Why this? Why now?

Making sense of suffering is one of the great existential challenges we face. How to relieve suffering is another. How to bear it ourselves is probably the greatest task of all.

"When we are no longer able

to change a situation,

we are challenged to change ourselves."

~Viktor Frankl~

Conventional, albeit uninspired, wisdom suggests we reframe the questions we ask:

Why not me?

Why not this? 

If not now, when?

This, though, oversimplifies the issue and denies its deep emotional origins and effects. It makes it sound as if we should know better.

People who don't understand the depth of pain suggest that we simply let it go...our anger, grief, shame, despair...since we can't do anything to change what happened to us. This, of course, is impossible, so that's no help.

Whether what happens to us or around us arises coincidentally, or synchronously, or paradoxically, or it simply strikes us as bad luck, our goal should be to stay grounded. To acknowledge and embrace reality as it unfolds, and to explore our emotional and psychological response to the truth.

I don't think I did anything to provoke the dog that snapped at me. My brother didn't do anything to cause the stroke that changed the course of his life forever. There was nothing my friend could have done to slow or stop the inevitable course of the disease that claimed her daughter's life. We are stuck with reality.

As Ralph Waldo Emerson put it:

"The purpose of life is not to be happy.

It is to be useful,

to be honorable,

to be compassionate,

to have it make some difference

that you have lived and lived well."

...because we are sometimes rewarded for it. When something good comes our way--let's say we find a better paying job, or the scan comes back normal, or we win the lottery, for crying out loud!--remember to ask yourself:

Why me? Why this? Why now?

jan

 

taking the plunge

 

I took the plunge this week and registered for a weekend conference at Columbia University in October titled "Embodiment and Attention: Narrative Medicine Fundamentals." It builds on the program that was conceived, developed, and implemented at Columbia under the leadership of Rita Charon, M.D., PhD. It teaches health care providers to reflect upon and to write about illness as it affects their patients.

 



This goes beyond traditional training which is satisfied with arriving at an accurate diagnosis and effective treatment plan. It involves much more than clicking the bullets on an EMR. Exploring the patient's narrative provides insight into the ways illness/injury changes every aspect and every relationship in a patient's life. Their sense of self. Their ability/inability to fulfill their perceived role in the family and in society as a whole. Their fears and sorrows. Where they find strength. What gives them hope. This process enables doctors to see their patients as more than interesting or challenging cases. It empowers them to tend to the whole person--body, mind, and spirit.

 

"Stories are not material to be analyzed;

they are relationships to be entered."

~A.W. Frank~

 

This practice improves the physician's sense of engagement with his patients. It deepens empathy. It has been shown to improve physician satisfaction and to lessen the likelihood of burn-out.

 

"Writing improves clinicians' stores of

empathy, reflection, and courage."

~Rita Charon, MD, PhD~

 

But narrative medicine isn't just for doctors.

 

Everyone who works in a health care system carries untold stories with them. Nurses and aides, EMTs and first responders, and therapists in every field have important stories to tell. Even staffers like receptionists, orderlies, and maintenance and food service workers all have stories they could share with us.

 

"While medicine creates material

for writing, perhaps even more important

is that it also creates

a psychological and emotional

need to write."

~Daniel Mason~

 

But narrative medicine isn't just for them, either.

 

The book on narrative medicine begins with the patient's story...a story almost everyone can tell. If you have ever visited a doctor's office or an emergency room, or been admitted to the hospital, or been a caretaker for a friend or family member, reflecting on the experience can help you organize your thoughts about it. It encourages you to sort out and name your feelings about it. It clears away confusion, and that eases fear. When you tell your story and someone hears it, you both learn from it. When you write your story and someone reads it, you leave part of your burden on the page.

 

Storytelling applied to the practice of medicine is more than helpful. It is a healing process.

 

"Writing is medicine.

It is an appropriate antidote to injury.

It is an appropriate companion

for any difficult change."

~Julia Cameron~

 

I'm looking forward to Dr. Charon's opening address in October. I am interested to know if anything has changed in a healthcare system that neither allows the time, provides the tools, nor recognizes the importance of storytelling in medicine. A system that denies its role in healing.

jan

 

 

look for the helpers

 

Last week I made a last-minute trip to Dallas after my brother suffered a stroke. It wasn't major, but it was the proverbial straw-that-broke-the-camel's-back. After a few days in the hospital, he was transferred to rehab, and a few days later, to a long-term memory care facility. Weak. Frail. Confused at times, but still pleasant and cooperative.

This entire experience prompted me to reflect on the care he is receiving. I have acquired new appreciation, respect, and admiration for his caretakers. Every day, they take on tasks that many of us are unable or unwilling to do. Lifting, pivoting, and positioning. Toileting. Reorienting him. Smiling, joking, and yes...even bringing a smile to his face. 

"CAREGIVER:

a scrub wearing, smile bearing rockstar

who lives to care and loves to encourage.

They are actually a pretty big deal."

~@CCA_LIFE~

And don't forget the kitchen staff who prepare the meals, serve them to the residents with a smile, and clean everything up three times a day, every single day. And the housekeepers who tend to the rooms and come running whenever there is a spill or a mess to clean up. As well as the people you never see...in the windowless basement tending to the laundry and maintenance. 

The speech and physical therapists.

The people who come in to read the residents, and to engage them in activities. Singing. Movement. Games.

The groundskeepers.

It takes a lot to run a facility like the one where my brother will, sadly, spend the rest of his life. Thank goodness there are helpers!

"When I was a boy 

and I would see scary things in the news,

my mother would always say to me,

'Look for the helpers.

You will always find people who are helping.'"

~Fred Rogers~

When I hurried down to Dallas to relocate my brother last week, little did I know how much help I was going to need when I got home. Help with back pain that came out of nowhere. Help with my auto inspection when I misplaced my insurance and registration cards in my rush to get to my brother's side. Help from the customer service rep at Verizon when I woke up this morning with absolutely no internet connection to my phone, computer, or TV. Help!

This is the thing: it is customarily hard for me to ask for help. I don't want to be a bother. I like to prove I can take care of things myself. I don't want to admit I'm getting older and falling out of the loop. 

But this is what all caregivers should remember. At times when you can't be the helper, don't be ashamed to look for one. And, if you can't find one...find another way to be one.

"The simple act of caring

is heroic."

~Edward Albert~

jan