Sunday, April 23, 2017

physician, advocate, friend



 

 
As a retired physician, I sometimes find myself in a role I am passionate about. I am sometimes invited to accompany friends to their appointments with specialists.
 
I took a friend with neuro-sarcoidosis to see a physician who specializes in this rare condition at Hopkins. I went to the oncologist with a friend who had a rare retro-peritoneal sarcoma to learn what options were available to her.
 
“The good physician treats the disease.
The great physician treats the patient
who has the disease.”
~William Osler~
 
To me, this is a great honor. They are asking me to listen with expert ears to the medical-ese--a foreign language to them--that specialists tend to use when discussing rare or life-threatening conditions. They count on me to help them make difficult decisions. They haven’t studied anatomy. They don’t have access to clinical trials. They don’t understand morbidity and mortality statistics. They want to know how long it will be until they feel better. When they can get back to work. Whether or not they will live to see their first grandchild.
 
Not only can I provide a “second set of ears” to help them recall important information…but I am able to interpret what we are told, and to translate it into a language they can understand.
Sometimes.
 
True story:
 
Last week I sat with a friend who was seeking a second opinion from a specialist about complications that arose following surgery to reverse a gastric bypass. That was two years ago. She has undergone 6 procedures since then in a failed effort to close fistulas that developed at the operative site and never healed. One of them has opened out to the skin and drains continuously. No matter what she eats or drinks, some of it ends up draining out through the opening…coffee, ice cream, noodles, corn.
 
“We don’t know how strong we are
until being strong is our only choice.”
~author unknown~
 
Her surgeon had nothing else to offer so he referred her to one of the top bariatric surgeons in our area for her thoughts on how to proceed.
 
The technical details were only part of the problem with this discussion. Honestly, my friend doesn’t much care about the details. She just wants to be healed, whatever it takes…which in her case would be a “miracle” according to this doctor. She described a risky and complicated procedure which would involve a whole team of surgeons, each lending his/her own expertise…and still there was no guarantee the fistula would close. Things could get worse instead of better. My friend could die.
 
Or…she could consider doing nothing. As hard as it is to imagine, she is still working. She maintains her home and yard by herself, and she gets around on her own. It’s just this awful, foul drainage that gets her down.
 
So now that she understands her situation, her treatment options, and her prognosis, the hard work begins. Facing reality. Surrendering to it. Pushing through. Maintaining some semblance of the resilience and determination that have kept her going these past two years.
 
As a physician, my job is done. I listened. I understood. I translated.
 
As an advocate and friend, though, my job is just beginning…
 
“Some patients,
though conscious that their condition is perilous,
recover their health simply through their contentment
with the goodness of the physician.”
~Hippocrates~
jan
 
PS: Every week I contemplate a topic for this blog. For inspiration, I sometimes read up on the field of narrative medicine. Sometimes I look into medical research. I often reach back into my own memory and experience. Last week, though, this story was hand-delivered to me by pure chance. It would be gratifying if, after reading this woman’s story, someone were prompted to offer a prayer for her. If someone found the strength and courage to continue his own medical battle, or to reach out to a friend who is facing a life-threatening illness. Each one a step on the journey toward healing. Thanks for listening.
 


Wednesday, April 12, 2017

how storytelling reopens the wound

 
If you are reading 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, or a caregiver—or if you have ever been sick yourself—you may have an untold story wreaking havoc in the back of your mind. Perhaps it reflects a difficult, sad, or frightening episode in 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 even given it a try.
 
“A writer is someone
for whom writing is more difficult
than it is for other people.”
~Tomas Mann~

 
Or…perhaps you’ve started the 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.

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 a of couple of writing prompts for health care providers that may help:
·         Write about “expectations” you’ve embraced (or rejected).

·         Tell us what it feels like to work without sleep, on an empty stomach 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 were sick, or caring for someone who was ill, try these:
·         Write about your hands.

·         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 comes later.
Instead, write about the first thing that comes to mind.
 
“When in doubt,
tell the truth.”
~Mark Twain~

 
Give yourself 15 minutes or so at it, then rest. Wait a couple of days and then try again. Write until you come up against the piece that is hardest to write…a time when you were so sad or scared or angry you still hesitate to commit it 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 players, and face the feelings that have festered out of sight for so long.
Storytelling unmasks the wound so healing can begin.
“There is no greater agony
than bearing an untold story inside you.”
~Maya Angelou~
jan

 

 

 

 

 
 
 

 

 

 

 




Tuesday, April 4, 2017

more than meets the eye

 
I called my best friend last night. We don’t get to see one another very often, but we talk every week. After we catch up on all the things that keep us busy, the conversation turns to friends and family.
Here are a couple of the stories we shared this week:
 
·        My friend described the plight of a woman who has undergone eight operations in a futile effort to eliminate a recurring MRSA infection post-total knee replacement.
·        She expressed her concern for a neighbor in her seventies who took a tumble and broke her hip, and then, a few weeks later, fell again and suffered a subdural.
·       We discussed the story of a woman from her church who is losing her battle against metastatic breast ca.
·        I told her that a friend of my daughter’s, recently married, had suffered a miscarriage over the weekend.
…not one happy moment among them.
The thing is that these occurrences are not uncommon. We encounter them every day. In fact, stories like these are so commonplace we are tempted to dismiss their gravity and to overlook the emotional devastation that remains in their aftermath.
“Under the look of fatigue,
the attack of migraine, and the sigh
there is always another story.
There is more than meets the eye.”
~W H Auden~
But what if we knew those details? Are we interested, empathetic, compassionate or simply curious enough to ask? Is there more to the story?
·       The woman with the recurring MRSA will be going off IV antibiotics in a week or two. Every time she does, the infection recurs…seven times, so far. If it happens this time, she will be staring down the barrel at an amputation…
·        Several months earlier, the neighbor who fell and her elderly husband became foster parents to their grandson who was 9 months old at the time…
·       The woman with the metastatic breast cancer had entered hospice care. The question that arose for my friend was whether or not it was too late to give her a call. What could she possibly say?
·       The young woman, who under her doctor’s direction miscarried at home, described herself as feeling like a “monster” for having to flush her baby down the toilet.
There is always more to a story than first meets the eye. It pays to go deeper. To draw out the most painful details. How else will we know what a person needs? How to help? What to say?
“Everyone you meet is fighting a battle
You know nothing about.
Be Kind.
Always.
~various attributions~
Last night I spent an hour on the phone with another a friend whose autobiography should be titled, “Anything That Can Go Wrong, Will…” Her story is one of multiple oversights, erroneous assumptions, and mistreatment during a recent hospitalization that would give Stephen King nightmares, I kid you not. Untreated hypertension and untreated pain complicated by complacent nursing care. Today, she thanked me just for listening.
 
It turns out that narrative medicine is alive and well in every community, in every neighborhood and around every kitchen table. What is your story?
“Tell me your story,
show me your wounds,
and I’ll show you what Love sees
when Love looks at you.
Hand me the pieces,
broken and bruised,
and I’ll show you what Love sees
when Love sees you.”
~from “When Love Sees You”~
~lyrics by Mac Powell~
jan