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