the consequence 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 is spearheading 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 claimed the lives of three 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~

jan

survival 101

This may not sound like a political rant, but it is. It's about surviving the news that greets us every day...coming from a man who is totally out of touch with reality, but nevertheless, has been entrusted with our nuclear codes. Scary thought. 

This is about loss of environmental protections, the eradication of public health initiatives and medical research (just when we are on the path to treatment of cancer with mRNA vaccines...), and the elimination of programs to protect the safety and purity of the water and food we have always taken for granted. It opposes gun violence. It is a call to alarm as the economy crashes, the military marches into our own cities, and human rights are dismissed with a shrug of someone's shoulders. It is a reminder that cruelty, arrogance, and greed are alive and well on Planet Earth.

"Deliberate cruelty is not forgivable.

It is the one unforgivable thing,

in my opinion."

~Tennessee Williams~

How are you coping with it? Are you worried? Scared? Disgusted? Angry? Depressed?

You could be experiencing all of those feelings...but still, you don't have to be consumed by negativity. I would recommend you try what I like to call "fierce mindfulness." It has been especially helpful to me this past week. If you already practice mindfulness meditation, you are ahead of the game. If not, this is a good time to start. You'll wish you had as the situation worsens...

For me, fierce mindfulness is an act of countercultural resistance, a refusal to succumb to the threats to our safety, well-being, and peace that are imposed on us by people who claim to be in power. Billionaires. Politicians. Liars and cheaters. You know who I mean.

I focused on mindfulness many times this past week. When the president announced his plans for a new White House ballroom. When RFK dismantled research into mRNA vaccines. When the military was deployed to the streets of Washington, DC. I could go on...

Here's how I did it. While other people fretted, or ranted, or chose to ignore the news and carry on as if nothing were wrong, I simply turned my attention to my very own senses, right where I was, in the moment. I focused on what I was seeing in the moment. What I was hearing. How the air around me felt. Which added up to something like this, most days: The sky was clear blue and cloudless. The air, warm. The breeze, gentle. I asked myself, "What more could I want? What could be better than this?" The chaos, the cruelty and injustice, the suffering of the entire world did not cause a ripple in my reality at the moment. In most of my mindful moments, in fact.

"You are the sky.

Everything else is just the weather."

~Pema Chodron~

When we surrender to worry, dread, anger, and fear we give them power over us. We bow to the enemy...but we don't have to. We can turn our attention inward. We can focus on all the ways the universe supports us. With intention, we can always find something to feel grateful for. Something that embraces beauty and peace. Something that heals us. Just a few minutes of respite from the craziness reminds us that there is hope.

"Resistance is feasible even for those 

who are not heroes by nature,

and it is an obligation, I believe,

for those who fear the consequences

and detest the reality of the attempt

to impose American hegemony."

~Noam Chomsky~

jan

how you can provide a safe harbor

 

A while back (see "take this test", November 23, 2021) I wrote about the Adverse Childhood Experience survey, something we were never taught about in medical school despite the fact that a growing body of evidence supports the link between childhood trauma and the development of physical disease and mental health disorders later in life. Childhood trauma includes physical, emotional, and sexual abuse, physical, verbal, and emotional neglect, living with a depressed, mentally ill, or addicted parent, witnessing domestic abuse, and losing a parent to separation or divorce...among others. Chronic adversities like these actually change the architecture of the child's brain, altering the expression of genes that control stress hormone output. This triggers an overactive inflammatory response that can lead to adult disease states, notably autoimmune conditions like lupus and rheumatoid arthritis, heart disease, and PTSD-like anxiety and reactivity. These long-term effects should compel all of us to take the problem of childhood trauma seriously. We should do all we can to identify it, prevent it, and mitigate it.

"You can spend a lifetime

trying to forget a few minutes

of your childhood."

~www.HealthyPlace.com~

This week, I came across another interesting issue that I was never taught about. It has to do with attachment disorders that arise in infancy and early childhood and how they affect health in adults, notably the same kind of autoimmune, cardiovascular, and psychological problems that childhood trauma does. Issues related to childhood attachment will be reflected in adult personality traits, behavior patterns, and relationship difficulties. Repression of anger is especially harmful. 

It turns out that there is a method for uncovering some of these issues in our patients. It is called the Adult Attachment Interview, or AAI, a twenty-question survey that is designed to explore how infants become attached to their parents...or not.

This is it:

Adult Attachment Interview (AAI) (George, Kaplan, and Main 1996) 

The AAI Questions:

1. To begin with, could you just help me to get a little bit oriented to your family—for example, who was in your immediate family, and where you lived?

2. Now I’d like you to try to describe your relationship with your parents as a young child, starting as far back as you can remember.

3–4. Could you give me five adjectives or phrases to describe your relationship with your mother/father during childhood? I’ll write them down, and when we have all five, I’ll ask you to tell me what memories or experiences led you to choose each one.

5. To which parent did you feel closer, and why?

6. When you were upset as a child, what did you do, and what would happen? Could you give me some specific incidents when you were upset emotionally? Physically hurt? Ill?

7. Could you describe your first separation from your parents?

8. Did you ever feel rejected as a child? What did you do, and do you think your parents realized they were rejecting you?

9. Were your parents ever threatening toward you—for discipline, or jokingly?

10. How do you think your overall early experiences have affected your adult personality? Are there any aspects you consider a setback to your development?

11. Why do you think your parents behaved as they did during your childhood?

12. Were there other adults who were close to you—like parents—as a child?

13. Did you experience the loss of a parent or other close loved one as a child, or in adulthood?

14. Other than any difficult experiences you've already described, have you had any other experiences which you should regard as potentially traumatic?

15. Were there many changes in your relationship with your parents between childhood and adulthood?

16. What is your relationship with your parents like for you currently?

17. How do you respond now, in terms of feelings, when you separate from your child / children?

18. If you had three wishes for your child twenty years from now, what would they be? I'm thinking partly of the kind of future you would like to see for your child I'll give you a minute or two to think about this one.

19. Is there any particular thing which you feel you learned, above all, from the kind of childhood you had?

20. What would you hope your child (or, your imagined child) might have learned from his/her experiences of being parented by you?

It requires some training to use this interview effectively; the questions require more than a yes or no response. It requires the provider to assess not only what the patient says, but how they express themselves, for example whether they respond fluently or haltingly, in detail or with a paucity of words, consistently or with frequent self-contradiction. 

The interesting thing about it is this: when the interview is conducted even before a person has a child, it can predict the attachment style they will develop as a parent: secure, avoidant, ambivalent, or disorganized. This, in turn, can raise concern for future problems with health and well-being as an adult, possibly paving the way for early intervention.

The point is that, as health care providers, we rarely have the time or expertise to explore these issues with our adult patients, much deal with them in treatment. How, then, can we help them heal?

"Give me your past,

all your pain,

all your anger,

all your guilt.

Release it to me and

I will be a safe harbor for the life

you need to leave behind."

~Jewel E Ann~

jan

if not now, when?

When I retired in order to begin all over again as a wannabe writer, I didn't know what I was getting myself into. I didn't know if I had any talent for this kind of thing, any hope of success, or the necessary dedication to it. Nevertheless, I put my misgivings aside, summoned whatever courage I could muster, and cleared my desk so I was ready to try.

Since then, I've learned there are certain signs that writing is a person's true passion in life. Is it yours?

"I'm one of those people

who believes you should start writing 

before you're ready."

~Joseph J. Ellis

In my experience, these are the top ten signs that you, too, may be ready to begin:

• At any one time, you carry at least five pens with you (six to ten is even better). Go ahead. Check your purse or briefcase now.

• You have enough pens with you but sometimes you forget to carry paper. Therefore, sizable chunks of your manuscript are recorded on napkins, on the back of receipts, on used envelopes, and when that fails...on the back of your hand.

• You have perfected the ability to record plot points, dialogue, and gorgeous prose whenever and wherever your muse is kind enough to share it with you...and you can get it down without taking your eyes off the road.

• Sudoku makes you cringe.

"A writer's life and work 

are not a gift to mankind.

They are its necessity."

~Toni Morrison~

• You are reluctant but willing to concede that your laptop/word processor is a convenience, but you will defend the merits of pen and paper to the end. Remember the likes of Shakespeare, Dostoyevsky, Matthew, Mark, Luke, and John?

• When you're writing, you sometimes make yourself cry.

• Sometimes you make yourself laugh.

• When you read what you've written later on, it happens again.

• You have made peace with the word "delete".

"You may not write well every day,

But you can always edit a bad page.

You can't edit a blank page."

~Jodi Picoult~

• "I wasted the whole day," is not part of your vocabulary.

• You make excuses (Oh, all right--you sometimes lie) so that you can stay home alone.

Oops. That makes eleven sure signs.

The point is that unless you begin, you will never know what you can accomplish. You will never put your passion to the test, exercise your creativity, or realize your dream.  You will miss your chance to share what you have learned. You will never know if you have what it takes, and you will always wonder about it.

When do you plan to begin?

"If not now, when?"

~Eckhart Tolle~

jan

when the body says no

 

So...it happened again. A friend just received news of his advanced stage cancer diagnosis after months of waiting for diagnostic scans to be scheduled, then waiting for the biopsy, then waiting for the results...and now waiting to schedule a PET scan to determine what treatment might still help...sending us all to our computers to research what might lie ahead for them. It makes you wonder if all the delays will affect his prognosis and outcome, but let's not go there.

"Bad news does not get better

with time."

~Mark Villareal~

Instead, let's consider a few other factors that might affect the course of his treatment.

The book I coincidentally happen to be reading is "When the Body Says No" by Gabor Mate, MD. 

In it he discusses autoimmune diseases as well as immunity against common cancers and their relationship to stress:

• Why some people appear to be more susceptible to autoimmune diseases and some cancers, while others are spared. 
• The role stress plays in the unmasking of autoimmune problems, and how coping strategies affect the course of the disease (denial, repression, anger, depression).
• How negative and positive thinking affect healing.
• Strategies that can mobilize natural immunity and promote healing.

While genetics, environment, nutrition, and lifestyle are important, stress and how we cope with it also play a role. The field of psychoneuroimmunoendocrinology takes everything into consideration, measuring hormone levels, observing changes in cellular biology, exploring personality traits, and scanning the brain in response to stress to create profiles that correlate with patient outcomes. More or less.

The problem for my friend is that he has no background in medicine and can't really understand what is happening. Denial is in play, or perhaps it's the inability to process and express the emotions that flood patients in this situation. They can feel helpless. Confused. Doomed. 

"Even miracles take a little time."

~The Fairy Godmother in Cinderella~

While his family and friends rally around him to provide support, encouragement, and comfort, the medical community mobilizes its superpowers: surgery, radiation, chemotherapy, and now, immunotherapy. It's all pretty scary.

This is the thing. Patients need to understand what is happening to them, especially when the future is uncertain. Someone needs to ask what they are thinking. What they understand. What they believe. They may need to hear that this is not their fault. That options are available. That there is hope, or that hope is running out. It involves explaining what is happening every step of the way, and the reasoning that goes into medical decision making. It means sharing our expectations for the patient. Even our fears. It means responding to theirs. If they don't process and express the feelings that flood them, they are left to flounder in a sea of confusion, fear, and despair...not a healing space around them.

"Three factors that universally lead to stress:

--uncertainty

--lack of information

--loss of control."

~Gabor Mate, MD~

This is a process that involves not just our patients, but the people who gather at their bedside because they care about them. Because they love them. When we treat patients, we treat their family and friends, as well. They need to understand what is happening and what to expect. They deserve our attention. They need our consideration, compassion, and support, too.  

The overwhelmed physician may suggest this is what we have nurses, social workers, psychologists, pastors, and family and friends for. In today's health care culture, you can get away with this. You can focus on the bulleted lists in the electronic medical record and leave the rest of it to your staff. You can apply what you know about medical and pharmaceutical technology without really knowing your patient. He will still heal. But by disengaging yourself from your patient's psychological, emotional, and spiritual life, and from his family and friends, you sacrifice your connection with him. Unless you include them in his care, you disconnect him from his support system. From his caretakers. This can leave all of them with fear, uncertainty, confusion, and dread when what they need is engagement, support, and understanding.

How do you support your patients and their families when the prognosis is poor, and the way forward is difficult? Do you know...or care...about their fear, anger, or denial and how it affects their ability to heal? What could you be doing differently?

Remember:

"Everyone you meet is fighting

a battle you know nothing about.

Be kind. Always."

~Ian MacClaren~

jan

no mud, no lotus

 

If you are a healthcare provider in any field, or the caretaker for someone you love, you are well aware of the duality that permeates every aspect of reality...the coexistence and contradiction between joy and sorrow, between kindness and cruelty, between life and death. We feel this deeply every day in some way, but never more acutely than when the people around us are suffering.

If you are writing about your experience, you may feel the push and pull of duality in your narrative.

First there's the story you have pictured in your mind...and then, there's the process of translating it into words on a page. It can take you from soaring with enthusiasm to slogging through the muck. You may find yourself stuck.

"No mud, no lotus."

~Thich Nhat Hanh~

Inspiration wanes, fatigue sets in, and the story line languishes. Self-doubt creeps in. And even though the end is in sight, like a desert mirage, it fades away the closer you get to it.

"What makes the desert beautiful

is that somewhere it hides a well."

~Antoine De Saint-Exupery~



This is a lonely place for writers. Your manuscript isn't polished yet so no one else has seen it or commented on it. Therefore, you don't get to enjoy the inspiration that comes with an exchange of ideas, weighing in on suggestions from writing partners. You need a fresh infusion of incentive, like the energy that emerges when composing a query letter or submitting to an editor or agent. But you're not there yet. This is just hard, lonely work, day after day.



How do you cope with it? 

Sometimes I'll take a little time out to dash off a piece of flash fiction, a short essay, or, like today, a blog post. It's like indulging in a little snack when you can't wait for supper.

 

Sometimes I have to tear myself away from the keyboard and polish off a few necessary chores before I can concentrate again. For example, when there's no food in the house, or I run out of clean underwear. I mean, priorities do change. Writing sometimes has to wait while life marches on. Storytelling may have to take a back seat for a while.

What can you do in the meantime?



When I'm stuck for an idea or unsure how to put one into words, I'll pick a random passage to edit and revise, backtracking a bit until I'm sure I'm on the right path again.

"Real writing begins with rewriting."

~James A. Michener~



It also helps to read something by another author on a similar topic. A couple of my go-to favorites are:

"Memoir as Medicine" by Nancy Slonim Aronie

and

"Still Writing" by Dani Shapiro

Just the process of reading beautiful writing invites the mind to get in on the action. 

Do you ever get bogged down in the middle of a project? What do you do to recharge? To move ahead? How do you get it all done?

"Many of life's failures

 are people who did not realize

how close they were to success

when they gave up."

~Thomas A Edison~

jan

the willing suspension of disbelief

...in case the heat is starting to get you down...

The stack of books-to-be-read on my nightstand, coffee table, and desk is getting out of control! 

It's not that I don't like to read. I do. It's not that I don't have time to read. I do. The problem is that one interesting thing leads to another. For example, in "Brave New Medicine", Cynthia Li, MD talks about autoimmune diseases and the role of functional medicine (traditionally known as "alternative" medicine including such practices as acupuncture, Qigong, meditation, Reiki, and other forms of energy medicine) in treatment. This leads her to a discussion of the roles of neuroplasticity, quantum theory, and epigenetics in healing and how our health is affected by our thoughts, beliefs, and intentions. It's no wonder I get distracted.

Li, a board-certified internist, traces her own journey, beginning with a bout of postpartum thyroiditis that never really goes away. She describes the devastating effect it has on her professional and personal life, and the frustration and defeat she felt when traditional allopathic medicine failed for her. She encourages the reader to explore alternative, or functional methods, when all else fails.

"When you have exhausted all possibilities

remember this:

you haven't.

~Thomas Edison~

The point is that autoimmune problems run in my family, so I know they can be notoriously difficult to diagnose, and frustrating to treat. In fact, one of us underwent surgery just last week for an autoimmune condition that has insidiously progressed over the years despite ongoing medical supervision and treatment. And I was just switched to a drug that runs over $7,000 per month which puts it totally out of reach for most of us except that Medicare, supplemental insurance, and a generous patient assistance program through the company that produces it, cover most of the cost...if you "qualify".

Autoimmune disease exacts a harsh physical, emotional, and financial toll on patients and their families. The symptoms vary. The diagnosis can be elusive. The treatment can be expensive, cumbersome, and often ineffective. Not to mention that we know so little about its causes and prevention. 

When a patient encounters a difficult diagnosis, fails to respond to traditional treatments, and gets worse despite our best efforts to help them, it may be worth looking outside the proverbial box and consider something completely different. Li invites us to "suspend disbelief" and keep an open mind to alternative practices that have a long history of success in other cultures and systems, which is how she finally healed.

"Your body's ability to heal

is greater than anyone has permitted

you to believe."

~Bruce Lipton, PhD~

jan

on the brink

 

Most of us would agree that the key to a long life has something to do with maintaining a healthy lifestyle. Following a healthy diet. Maintaining a normal BMI. Exercising regularly. Keeping the mind active and engaged. Avoiding cigarettes, alcohol, and other drugs and inhalants. Managing hypertension, diabetes, and other chronic diseases. Controlling stress. Some of us even believe that relaxation techniques and meditation are helpful. Some people embrace faith as a factor. It all makes sense.

"The secret to living well and longer is to:

Eat half,

walk double,

laugh triple,

and love without measure."

~Tibetan Proverb~

This past week, though, a few other possibilities came up. These are based on studies performed by people who have dedicated their professional lives to unlocking the secrets for living longer and better. One study looked at napping patterns as an indicator. It turns out the timing of naps, their duration, and frequency can be an indicator of poor health. So, try to avoid long naps late in the morning and around midday. Thankfully, however, a quick power nap every so often seems to be safe.

"Let's begin by taking a

smallish nap or two."

~Winnie-the-Pooh~

A number of studies promote the idea that social interaction is important and that loneliness and isolation are detrimental, which is a bit off-putting to those of us who enjoy solitude and prefer silence. We can be perfectly happy, healthy, and engaged in relative isolation. Then there's the suggestion that having a dog can help. A dog provides companionship and requires exercise, so that makes sense. Poverty seems to have a negative impact, while wealth is good. Duh!

The problem with these studies is that it's hard to control for all the factors that play a role in longevity. So, for the most part, these associations suggest they are correlated, but don't prove causation. This is reassuring because, if napping shortens one's lifespan, I'd need to dramatically increase my caffeine intake. And if having a dog adds years to one's life, I know right where to get one. (It's a rescue...)

The point is longevity is partially determined by genetics and luck (meaning whether you're lucky enough not to get sick). No one questions the value of a healthy diet and lifestyle, exercise, and loving relationships. To these, I would add:

• Stress management in the form of meditation, yoga, and practices such as Tai Chi and Qigong
• Spending time outdoors

"Everybody should be quiet 

near a little stream and listen."

~Christopher Robin~

• Engaging in creative and/or cognitive activities
• Relaxing into music you love
• Self-care, whatever that means to you

"Self-care is a divine responsibility."

~Attribution Unknown~

As we totter on the brink of nuclear war this week, remember this:

"In the end, 

it's not the years in your life that count.

It's the life in your years."

~Abraham Lincoln~

jan

truth or consequences

Don't judge anyone, ever. Not for their green hair, or the ring in their nose, or the tattoo on their bum. Not for the clothes they wear, or the car they drive, or the shelter they depend on. That's one lesson I learned at the "Writing from the Heart" workshop with Nancy Slonim Aronie. Don't judge people when you don't know their stories. You can't tell what they've been through by the look on their faces when you pass them on the street. You can't imagine the heartache that keeps them up at night. If you knew, you'd invite them all in for milk and cookies.

"Everyone you meet is fighting

a battle you know nothing about.

Be kind. Always."

~Robin Williams~

Another lesson we learned? Humans need to feel safe. Free from judgement. Embraced just as they are, all tattered and torn. Why? Because until they feel safe, they'll never tell us their stories. Unless they can cry right there in front of people--strangers, even--without fear, they won't say a word.

"Lokah Samastah Sukino Bhavantu."

~May all beings, everywhere, be happy and free~

At this workshop, twenty-two of us, strangers one and all, sat in a circle and bled onto the page for 10-15 minutes at a time to prompts like these:

• The hardest thing...
• What I didn't tell you then...
• A time you acted one way, but felt another...
• Dinner at my house...
• I picked up the phone...
• Waiting...

At the end of fifteen minutes, we read what we had written. This wasn't one of those workshops that invites you to read your piece if you'd like to...because you're so proud of it. No--everyone read what they had written. 

"As a writer, the worst thing

you can do is to work

in an environment of fear of rejection."

~Carol Leifer~

It wasn't the quality of our prose that mattered, but the depth of feeling and the honesty that went into it. There were tears and there was laughter. There were breakthroughs. Transformations. Victories. 

Here's one piece: 

True Story:

A time I acted one way, but felt another...

Visiting hours had ended. The lights had been turned down for the night. Except for an insistent call bell somewhere down the hall, the floor was quiet.

I was standing at the nurses' station with the attending on the case, Dr. Bush, and a man he introduced as the husband of the latest after-hours admission. 

Dr. Bush presented the case in standard rhythm and verse: "The patient is a 46-year-old Caucasian female who presents with a one-month history of shortness of breath and cough, a twenty-five-pound weight loss, and night sweats. She is being admitted for further evaluation and treatment."

He slipped her X-rays into the viewing box, and there it was--the smattering of hazy white balls in both lungs that shouted the word "cancer."

Dr. Bush glanced at the patient's husband. "Paul?"

The man straightened his shoulders and looked me in the eye. "The word cancer is not to be used around my wife. Do you understand?" he said. A tear escaped. "It would kill her if she knew."

Suddenly, what appeared to be a sad but straight forward case became a moral dilemma.

Dr. Bush repeated, "Doctor? Do you understand? She is not to hear the word cancer. Tell her anything, just not that."

The name of this game is "Let's Pretend." Let's pretend the patient doesn't have cancer. That it's something else. Let's pretend that this will somehow make it easier for her. That it will erase her worry, relieve her pain, give her hope.

But what was I supposed to say when she asked, "What's the matter with me, Doctor? What did you find?"

That pneumonia sometimes presents like this? That even adults can develop asthma later in life? That we'll get to the bottom of this, don't you worry?

How will she prepare for the end? Who will be there to help? Who will stay at her bedside and hold her when she cries? How will she say goodbye to her children? How will she plan her funeral? Who will choose the music and prayers?

I wanted to say, "No, Dr. Bush. I do not understand. It isn't right to lie to her. This isn't the time to pretend."

Instead, I picked up my stethoscope and started down the hallway to the patient's room. 

So, what would it be? Tell her the truth, or face the consequences?

*

Go ahead. Give it a try. Tell us what, for you, was the hardest thing. What you wish you had done differently. What you wish you had said but didn't. You have fifteen minutes. Go!

Then, find a safe person and read it to him or her.

"Write your story on my heart."

~Brene Brown~

jan

true stories & big ideas

 

In a couple of weeks, I'll be heading to a writing retreat with Lara Love Hardin who, prior to registering to spend the weekend with her, I'd never heard of. Looking back, I think I should have known something about her because I've read several books she co-authored with none other than the Dalai Lama and Archbishop Desmond Tutu (The Book of Joy and The Book of Forgiving) Out of curiosity, I ordered a copy of her memoir, "The Many Lives of Mama Love", you know...just to see if her writing resonated with me. To see if I thought I could learn something from her...

...because, it turns out, we're nothing alike. 

Or maybe we are.

She was a typical suburban soccer mom until she got hooked on Vicodin, "as needed for pain". Long story, short...she eventually became addicted to heroin and plunged into a life of crime to support her habit. That landed her in jail. Me? I've never so much as smoked a cigarette and the last time I drank a little too much, I was in high school. The closest I've come to a run-in with the law was a speeding ticket, also in my teens.

Her story portrays the time she spent in jail and on probation. Her utter helplessness against the system. The injustices she suffered. The shame that blanketed her. And then, the redemption she earned as a writer.

"True redemption is when

guilt leads to good."

~Khaled Hosseini~

I would not generally choose to read a woman's prison memoir, but I have not been able to put this book down. It resonates deeply with me because I can identify with her story even though it is so different from mine. I understand her struggles. I can identify with her desperation, uncertainty, and despair. Her heartache. Her surrender. Turns out, we have quite a bit in common.

This is the thing: These are universal themes that we all encounter in one way or another in our very different lives. Our weaknesses and longings sometimes lead to defeat. We are betrayed, shunned, or abandoned by people we trust. Most of us will beg, borrow, or steal, metaphorically speaking, at some point in our lives in order to meet our needs. We feel shame. We bear blame. But, as this story posits, forgiveness, redemption, and reconnection are within reach for all of us.

Books like this seem to land on my nightstand out of the clear blue sky. I wasn't looking for it. I never would have pulled it off the shelf at the bookstore or library. It's as though the muses conspired to provide me with what I needed before I knew something was missing. 

"Some books find us

at just the right time in our lives

and those books change our lives forever."

~Matthew Kelly~

This is something we should all strive for in our writing. To touch on universal themes and emotions. To lead the reader into the depths of our fear, grief, and despair...and then to resurrect him. To show him the way out. To show him how we found our way back. To give him hope.

Now I'm really excited about spending the weekend with the author. I feel as though I know her already. I think I'll learn a lot from her.

jan

hunting for zebras

 

When we were studying the art of clinical diagnosis in medical school, we were cautioned not to look for "zebras"--those rare, exotic diseases and conditions we studied but were unlikely ever to encounter in clinical practice. In other words, when a child presents with fever and rash, Fifth Disease or chicken pox should come to mind before you think about less common causes, like Rocky Mountain Spotted Fever or rubella. When a patient comes in with abdominal pain, rule out appendicitis and cholecystitis before you start to worry about Familial Mediterranean Fever. If the problem is dehydration and diarrhea, consider viral gastroenteritis or food poisoning before you think about cholera.

 

"If it looks like a duck,

and walks like a duck,

and sounds like a duck...

chances are it probably is a duck."

~unknown~

 

Not always, though.

 

True stories:

• The patient was a woman in her sixties. She was admitted from the ER directly to the OR with a diagnosis of "acute appendicitis." She'd had increasing pain and tenderness in the right side of her abdomen for two days. 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 on the operating table and the OR team was ready to go. "Don't waste time," I was told. So I took a quick history, checked the patient's 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. Zebra #1.

• A twenty-two-year-old man presented with a several week history of fever and malaise. Two weeks earlier, he'd seen a doctor who diagnosed him with a non-specific viral illness. Upon careful examination, he now had a soft (barely audible) diastolic heart murmur and mild enlargement of his spleen, classic findings for subacute bacterial endocarditis. He died two weeks later. Zebra #2.

• A sixteen-year-old presented to his PCP with a two-week history of a cold and sore throat. Everyone in his family had had the same symptoms and had recovered uneventfully. The patient's sore throat, however, persisted and was getting worse. Long story short, what sounded like a straightforward case of pharyngitis or Strep throat in a healthy adolescent, turned out to be gonococcal pharyngitis in a closeted gay teenager. The sexual history is not something most of us routinely obtain when we're seeing a patient for upper respiratory symptoms. Zebra #3.



"Medicine is a science of uncertainty

and an art of probability."

~Sir William Osler~



Today, more than ever before, physicians and other health care providers are under intense pressure to see more patients faster. It's tempting to jump to conclusions. To rush through the patient's history and to gloss over portions of the physical exam in order to save time. Sooner or later, though, you're likely to miss an important detail in the patient's story, or to overlook a subtle finding on examination that points to the diagnosis. 

 

What you think is just another pony over there in the field, may turn out to be a zebra, after all.

 

"The intuitive mind is a sacred gift,

and the rational mind is a faithful servant."

~Albert Einstein~

jan

 

how storytelling reopens the wound

 

If you follow this blog, you probably have some familiarity with, or curiosity about, the concept of storytelling as a healing practice. If you are a health care provider, a therapist in any field, a caregiver—or if you have been sick yourself—an untold story may be wreaking havoc in the back of your mind. Perhaps it reflects a painful, sad, or frightening episode from your past…something you’d rather not resurrect. Maybe there was a time of such joy or relief or healing you can’t imagine putting it into words so you haven’t given it a try. Yet.

This post is dedicated to my brother who, I believe, fits the first of these profiles--the painful one--as the result of a serious childhood illness. At the age of 79, he has started to write his memoir. Cue thunderous applause!

"A writer is someone

for whom writing is more difficult

than it is for most people."

~Thomas Mann~

Perhaps you’ve started to write your own story again and again and gotten nowhere with it. It turns into a rambling description of places, persons, and events that fails to capture the emotions that made the experience meaningful to you. That fails to explain why it stalks you so many years later, and still affects your feelings and behaviors.

This is where a good writing prompt can be helpful. That and a supportive reader who knows how hard this is for you and heaps praise upon you just for trying.

If you need a little nudge to get you started, here are a couple of writing prompts for health care providers that might help:

·         Write about “expectations” you’ve embraced (or rejected).

·         Tell us what it feels like to work without sleep, on an empty stomach, when you have to pee, in the middle of the night.

·         What goes through your mind on the way to work in the morning…or on your way home at the end of the day.

If you are the one who was sick, or you cared for someone who was ill, try these:    

•    Write about "waiting."

·         Tell us what you fear the most.

·         Tell us what you do to care for yourself.

When you begin, don’t worry about grammar, spelling, or punctuation. That’s the easy part. It can wait. Instead, write about the first thing that comes to mind.

"When in doubt, tell the truth."

~Mark Twain~

Give yourself 15 minutes or so, then rest. Wait a couple of days and try again. Write until you come up against the piece that is hardest to put into words…a time when you were so sad or scared or angry you still hesitate to commit it to paper…or so comical or comforting or inspiring it leaves you groping for words.

"The most important things are

the hardest to say

because words diminish them."

~Stephen King~

When you write, include details even if they seem insignificant. The missing tile on the ER wall. The overflowing trash can in the visitors’ lounge. The ladybug that made its way into the OR. These familiar images connect the reader to your story. Use the senses to bring the scene to life. The sight of blood pumping out of a tiny artery after the other bleeders were all tied off. The taste of cold, black coffee in the middle of the night…and why you sometimes need it. The smell of stale urine.

"To create something exceptional,

your mindset must be relentlessly focused

on the smallest detail."

~Giorgio Armani~

An untold story can leave us with a vague sense of frustration, anxiety, or confusion that we don’t understand, and can’t dispel until we put it into words...until we set the scene, name the characters, and face the feelings that have festered out of sight for so long.

Storytelling unmasks the wound so healing can begin.

"Nobody cares how much you know,

until they know how much you care."

~Theodore Roosevelt~

jan

opting out

 

Last week I spent a few days with my granddaughter. She's five years old. One day, she invited a friend over to play, and everything seemed to be going well until her friend came to me asking to take her home.

"I don't want to play anymore," she said...and I thought to myself, I completely understand...because I don't want to play anymore, either.

I, too, want to go home, which in my ideal world would be somewhere near where this photo was taken, in the mountains along the Northface Trail near Murren, Switzerland, or in Wengen, or in Lauterbrunen...far, far away from a culture that is self-obsessed, driven by wasteful consumerism, and addicted to power and wealth. Far away from the political nonsense that is fueled by the media. In denial of climate change and its effect on the planet. Far away from the bigotry, cruelty, and abandonment of those in need. Ridden with conspiracy theories, outright lies, and fraud.

Health care providers, in particular, should understand that we are tottering on the brink of disaster at the hands of political appointees who lack the knowledge, experience, and wisdom required to protect both health care delivery and public health policy. 

Our narrative is shifting.

"Suffering by nature or chance

never seems as painful

as suffering inflicted on us

by the arbitrary will of another."

~Arthur Schopenhauer~

I don't know about you, but I get tired of it. I get discouraged. I am fearful. Some days, I just don't want to play anymore. I want to go home, to a place of relative solitude, simplicity, and peace. Of respite and restoration. Of mindfulness and healing...if only for a little while.

"...walk away from situations

that threaten your peace of mind,

self-respect, values, morals, or self-worth."

~marcandangel.com~

Last week, my granddaughter's friend went home for a little while, too...but the next day she was back, full of joy and playfulness, rested and energized, ready to reconnect...

...which is how we should all be. 

So...what do you do when things get to be just too much? What do you do that helps? Where is home for you?

"Whatever is good for your soul...

do that."

~attribution unknown~

jan