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

you have a divine responsibility

 

I've been trying to practice a little self-care lately, not because things have been particularly tough on me but because they've been really hard for a few people I love. My brother, who has mild vascular dementia and has been losing ground recently, had a slight stroke. It wasn't too bad, but it was the proverbial straw that broke the camel's back. While he was still in rehab, his wife ended up in the ER with severe abdominal pain. Because they live far away, it has been hard for me to help them, leaving me worried for them and feeling frustrated. Sleepless. Helpless. It's exhausting. So, I decided to give myself a break, which meant transferring a few tasks to my procrastination bin, napping without feeling guilty about it, and getting together with a friend who always cheers me up.

The issue of self-care is important when stress is high, especially for caretakers (and empaths like me).

Fortuitously, this week I came across a writing prompt that asked:

"What is your self-care practice?"

It was a multiple-choice question. The answers included: journaling, mindful movement (such as yoga or qigong), meditation, listening to music or podcasts, and reading. I chose meditation because I practice daily, and it helps keep me steady and strong, calm and compassionate. But later, on a path through the woods, I realized that walking is another self-care practice of mine. Walking in the woods, or near a stream, or by the lake. In the mountains. On the beach. Walking is a mindful and meditative practice for me. I like to think it helps keep me healthy. That it strengthens my bones. That it keeps my mind active and engaged. It promotes physical, mental, emotional, and even spiritual well-being.

"Walk as if you are kissing the Earth

with your feet."

~Thich Nhat Hanh~

In her book, "Welcoming the Unwelcome," Pema Chodron phrases it a little differently. She asks:

"When things are really tough--like you're scared, you're lonely, you're angry, 

everything's falling apart, during difficult times--

in what do you take refuge?"

Do you try to avoid the situation, or distract or comfort yourself by streaming Netflix, by overeating, or by turning to alcohol or drugs? To gambling? To sex? Do you make up stories that justify your anger, or jealousy, or disappointment? Do you dwell in self-pity? Blame? This is not self-care at all.

"Be good to yourself.

If you don't take care of your body

where will you live?"

~Kobi Yamada~

Self-care came up again when I was talking with a colleague who has been struggling with depression. Not sleeping well. Not eating well. I posed this question:

"If you had a patient who was struggling the way you are,

how would you care for them?"

She responded by saying she would prescribe an antidepressant, and something for sleep, and she would recommend therapy. Meaning, she would take good care of her patient, even though she wasn't seeking the same good care for herself. 

Do you take care of yourself? Do you believe in extreme self-sacrifice such as foregoing meals, exercise, or sleep in order to do your job? Do you suffer in silence? Do you have trouble concentrating, or making decisions? Are you in pain?

Self-care is a reflection of self-love and self-respect.

"Self-care is a divine responsibility."

~multiple attributions~

It has to be gentle, patient, and compassionate. If you wonder how to practice self-care, think about caring for a new puppy or a newborn baby. Then show yourself the same attention, concern, kindness, and joy. You'll feel better, and you'll be healthier, too. 

"Whatever is good for your soul,

do that."

~author unknown~

jan

how telling your story can help you heal

 

It doesn't take a stretch of the imagination to understand how hearing or reading just the right story at just the right time can help with healing. For example, you might gain a new perspective on an issue that has been troubling you. Perhaps you've been struggling with guilt after a friend committed suicide. You pick up a book like "The Ticking Is the Bomb" by Nick Flynn whose mother took her own life. His story looks at suicide differently. He considers the inevitability of it given the course of his mother's life. After reading it, you might see things a little differently. Maybe it wasn't your fault your friend found life unbearable. Perhaps you didn't miss the clues because there were none. A layer of guilt falls away.

Healing.

"The book I read after my mother died,

the how-to-deal-with-trauma book,

had failed to say when change could resume,

when one could go on."

~Nick Flynn~

~"The Ticking Is the Bomb"~

 

Or maybe your friend has been diagnosed with cancer, and it doesn't look good for her. You have no idea what to say or do for her, no clue how to help. Then you pick up a book like "Talk Before Sleep" by Elizabeth Berg, and you learn all the ways you can comfort and encourage her and even bring a touch of humor to the situation. 

 

Healing. 

 

It may be a bit harder to grasp the idea that telling or writing your own story can also be a healing practice. But it is.

 

Maybe for you, anger sometimes erupts without provocation. Perhaps you feel anxious even when life is going well. Maybe despair blankets everything you do for reasons you don't understand. Or a particular song always brings you to tears. You can't help it. Why?

 

"We don't write what we know.

We write what we wonder about."

~Richard Peck~

 

Intrusive thoughts and feelings are the shadows of traumatic memories. Remember the time your father hit your mother in a fit of rage? You were so angry you wanted to hit him back, so scared you didn't dare move, and you couldn't run away. You felt helpless as a child, and now you feel worthless as an adult.

 

Perhaps, in your family, you never knew when the front door would open and your father would come home drunk, and even though you were already in bed, he'd find you there...

 

Maybe that was the song you listened to so you didn't have to hear your parents argue.  

 

Your anger, or sadness, or fear needs to find a time, or a place, or a name to explain it. You need to know its identity, its source, and its setting in order to renegotiate your relationship with it.

 

Telling your story puts you in control. It helps you think about what happened. It helps you understand why. You get to decide how it ends. And that can help you heal.

 

 "At any given moment

you have the power to say,
'This is not how my story is going to end.'"
~Christine Mason Miller~

 jan

 

make me care

The art of storytelling is as old as the spoken word, and it's just as powerful. It entertains, informs, and connects mankind across culture, race, and creed. It has the power to heal, and in medicine, it can be a life-saving skill.

Most people enjoy reading or listening to stories at their leisure. The health care provider, on the other hand, listens to stories all day long because it's part of his job. This is how he obtains the "history of the present illness," perhaps better described as the "story of the present illness." It forms the basis of all that follows: performing the physical examination, tracking down the diagnosis, and formulating a treatment plan.

The clinical encounter begins when the health care provider takes the patient's history. He listens for specific details that lead him to the diagnosis. If the problem is pain, the provider wants to know where it's located, and whether it's sharp or dull, steady or throbbing, constant or intermittent. He wants to know how long the patient has had the pain--for a day? For a month? For years? What makes it better? What makes it worse? These details guide him through a maze of possibilities.

"The shortest distance

between a human being and the truth

is a story."

~Anthony de Mello~

The problem is that patients don't know what the provider needs to hear. They don't arrive at the office prepared to rattle off a list of relevant signs and symptoms. It's the provider's job to ask about them, but he only has so much time to get to the bottom of the patient's problem. Nowadays, the written or dictated clinical note has been largely replaced by the electronic medical record (EMR), so rather than listen to the patient's history, the provider navigates his medical record with a series of clicks that pull up an array of bulleted lists, complicated charts, and sketchy details. This is intended to expedite what has been ruthlessly abridged to a ten-minute office visit.

Because time is limited, doctors often redirect the patient who appears to be getting off track or is slow coming up with answers. In fact, one frequently quoted study found that physicians interrupt and redirect the patient when they are as few as 18 seconds into the interview. Frequent redirection leads the patient to believe that what he wants to say isn't important or relevant, so details go missing.

This is a problem. Healing, or failing to heal, occurs in the context of a person's relationships with his family and friends, his surroundings, expectations, and perceptions, as well as his emotional, psychological, and spiritual life. If the patient is denied the opportunity to tell his whole story, part of him may never heal.

"Healing yourself is connected to

healing others."

~Yoko Ono~

Let's say, for example, that the patient presents with abdominal pain. He answers all of his doctor's questions. The pain has been present for four days. He describes it as constant. It started in his upper abdomen, but now it radiates into his back. Eating makes it worse. In fact, the patient says he hasn't been able to keep anything down for the past twenty-four hours. After a focused physical exam and a few tests, the physician correctly diagnoses the problem as acute pancreatitis. But that doesn't explain why the patient develops a headache, has trouble keeping his balance, and becomes confused the day after he is admitted to the hospital.

What the doctor doesn't know is that the patient has been drinking heavily because his wife walked out on him recently. In fact, he blacked out a couple of days ago and woke up on the floor next to his bed. He didn't mention it because he was busy answering the doctor's questions about his abdominal pain. So, the doctor missed the small subdural bleed his patient sustained in the fall until days later when he had his first seizure.

This scenario highlights an important problem. Obtaining an accurate and thorough medical history takes time. Given the imperative to see more patients faster, the provider may have little time to explore the details of the medical history with every patient. Perhaps he's running behind schedule, or an emergency interrupts him. In some cases, the patient can't bear to disclose the sorrow, or fear, or shame that underlies his symptoms, so he doesn't mention it. It takes time to invite, enable, and encourage some patients to share the story that brings them to the office in the first place.

"Storytelling is the essential human activity.

The harder the situation, 

the more essential it is."

~Tim O'Brien~

When the patient is constantly redirected in order to satisfy the provider's agenda, important parts of the story may be overlooked. This reinforces the importance of hearing the patient's full narrative. When we reach into their cholesterol laden hearts to understand why they are poisoning themselves with food, we need to know more than what they are putting into their mouths. When a patient is noncompliant, we need to consider what he is afraid of, or angry about, or grieving over. When we allow the patient to speak, we may discover that the reason for this one's fatigue, or that one's intractable headache is end-stage disappointment, or anger, or shame that has festered for years.

Only then can we help them heal.

"The greatest story commandment is:

Make me care."

~Andrew Stanton~

jan

why you should take this test

 

Rotsund, Norway

The last time I saw my primary care physician for my annual wellness exam, I was handed a clipboard and instructed to answer page after page of questions. They included updates to my demographics, my insurance information, my family medical history, and a "health risk assessment" that included questions about lifestyle (exercise, diet, smoking, and alcohol/drug use), about my mood and stress levels, current and previous health conditions, dementia screening, recent falls, and my ability to perform daily activities such as feeding myself, dressing, and bathing. It may be annoying to fill out the same questionnaires year after year because it's time consuming and redundant...but it makes sense from a health maintenance perspective. This line of questioning helps the physician identify problems that predict poor health outcomes. It provides information he can use to institute preventive strategies, as well as timely interventions to correct or compensate for developing problems. 

"A facility that asks you to fill out

a health screening form is a sign of one

that really cares about its members."

~Kathi Davis~

Back when I was in practice, we didn't use screening questionnaires like these very much, but now they're considered an important part of the patient's medical record...which makes me wonder why the ACE (Adverse Childhood Experiences) Survey is not included in the paperwork we submit to our health care providers. This questionnaire addresses childhood trauma and its effect on the development of chronic disease in adulthood.  

A growing body of evidence supports the link between childhood adversity and the development of physical disease and mental health disorders later in life. Childhood tauma 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 leads to adult disease states, notably autoimmune conditions like lupus and rheumatoid arthritis, heart disease, and PTSD-like anxiety and reactivity.

You can take the quiz here. Answer yes or no:

Before your 18th birthday:

1.      Did a parent or other adult in the household often or very often swear at you, insult you, put you down, or humiliate you, or act in a way that made you afraid that you might be physically hurt?

2.      Did a parent or other adult in the household often or very often push, grab, slap, or throw something at you, or ever hit you so hard that you had marks or were injured?

3.      Did an adult or person at least 5 years older than you ever touch or fondle you or have you touch their body in a sexual way, or attempt or actually have oral, anal, or vaginal intercourse with you?

4.      Did you often or very often feel that no one in your family loved you or thought you were important or special, or that your family didn’t look out for each other, feel close to each other, or support each other?

5.      Did you often or very often feel that you didn’t have enough to eat, had to wear dirty clothes, and had no one to protect you, or that your parents were too drunk or high to take care of you or take you to the doctor if you needed it?

6.      Were your parents ever separated or divorced?

7.      Was your mother or stepmother often or very often pushed, grabbed, slapped, or had something thrown at her, or sometimes, often, or very often kicked, bitten, hit with a fist, or hit with something hard, or ever repeatedly hit over at least a few minutes or threatened with a gun or knife?

8.      Did you live with anyone who was a problem drinker or alcoholic, or who used street drugs?

9.      Was a household member depressed or mentally ill, or did a household member attempt suicide?

10.  Did a household member go to prison?

Add up your "yes" answers. This is your ACE score. If yours is greater than 0, you should be concerned.

The bad news is that the higher your ACE score, the more likely it is that your health and well-being are under assault. People with an ACE score of 4 are twice as likely to be diagnosed with cancer than someone with a score of 0. Each "yes" response increases the likelihood of hospitalization for an autoimmune disease by 20%. Someone with an ACE score of 4 is 460% more likely to face depression as an adult than someone with a score of 0. An ACE score of 6 or higher shortens an individual's life-span by almost twenty years. This is a big deal. 

The good news is that these early changes in the brain, and their subsequent effect on inflammation and the immune system can be mitigated. Epigenetic changes are reversible. There is a path to healing. 

Some of the practices that have been shown to promote epigenetic healing include:

• writing to heal
• drawing
• mindfulness and loving-kindness meditation
• tai chi, qigong, and yoga (moving meditation)
• dietary changes to promote a healthy microbiome in the gut
• guided imagery
• hypnosis
• neurofeedback
• EMDR

The problem is that childhood trauma is notoriously shrouded in secrecy, and very few healthcare providers are aware of these associations so they don't ask about them. Most physicians see several patients with high ACE scores every day, but all too often the underlying trauma that plays a role in the patient's illness goes unidentified. The opportunity to intervene therapeutically is, therefore, lost.

If you're interested in the relationship between adverse childhood experiences and their effect on health outcomes in adults, I would recommend you check out the book, "Childhood Disrupted" by Donna Jackson Nakazawa, or visit her blog online at www.donnajacksonnakazawa.com.

If you're curious about the role of epigenetics in illness and healing, check out "The Biology of Belief" by Bruce H. Lipton, PhD.

At the top of the list is "The Body Keeps Score" by Bessel van der Kolk, M.D.

"As the ACE study has shown,

child abuse and neglect is the single most common

cause of drug and alcohol abuse,

and a significant contributor

to leading causes of death such as

diabetes, heart disease, cancer, stroke, and suicide."

~Bessel van der Kolk, M.D.~

It is a shame to withhold this vast body of knowledge from patients when it offers an effective pathway to healing that has, so far, been largely ignored.

jan