An Audience of Terminal Patients

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Write as if you were dying. At the same time, assume you write for an audience consisting solely of terminal patients. That is, after all, the case.
~Annie Dillard from “Write Till You Drop”

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You’re going to feel like hell if you wake up someday and you never wrote the stuff that is tugging on the sleeves of your heart: your stories, memories, visions, and songs–your truth, your version of things–in your own voice. That’s really all you have to offer us, and that’s also why you were born.

~Anne Lamott in a recent TED Talk

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I began to write after September 11, 2001 because that day it became obvious to me I was dying, albeit more slowly than the thousands who vanished that day in fire and ash, their voices obliterated with their bodies.   So, nearly each day since, while I still have voice and a new dawn to greet, I speak through my fingers and my camera lens to others dying around me.

My good friend, Sara, who I’ve known and loved half my life, is fighting for her life in an all day cancer surgery today, having fought a chronic disease and a totally different cancer once before and won.  She knows well the hard cost of winning even when the odds aren’t good,  yet still has a courage in her to fight once again.

That will to fight is heavy on my mind today.

We are, after all, terminal patients, some more imminent than others, some of us more prepared to move on, as if our readiness had anything to do with the timing.

Each day I too get a little closer, so I write and share photos of my world in order to hang on awhile longer.  Each day I must detach just a little bit, leaving a small trace of my voice and myself behind.  Eventually, through unmerited grace, so much of me will be left on the page there won’t be anything or anyone left to do the typing.

There is no moment or picture or word to waste.

 

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Doc Season

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It may not be rabbit season or duck season but it definitely seems to be doc season, especially as the next version of the American Health Care Act is unveiled today. This (and the Affordable Care Act which preceded it) is not about patients — it is about how to keep doctors and the health care industry under reasonable cost control and maintain some semblance of quality service.

Physicians are lined up squarely in the gun sights of the media, government agencies and legislators, as well as our employers and coworkers, not to mention our own professional organizations, our Board Certifying bodies, and our dissatisfied patients, all happily acquiring hunting licenses in order to trade off taking aim. It’s not enough any more to wear a bullet proof white coat. It’s driving doctors to hang up their stethoscope much earlier than they expected just to get out of the line of fire. Depending on who is expressing an opinion, doctors are seen as overcompensated, demanding, whiny, too uncommitted, too over-committed, uncaring, egotistical, close-minded, inflexible, and especially, and most annoyingly – perpetually late.

One of the most frequent complaints expressed about doctors is their lack of sensitivity to the demands of their patients’ schedule. Doctors do run late and patients wait. And wait. And wait some more. Patients get angry while waiting and this is reflected in patient (dis)satisfaction surveys which are becoming one of the tools the industry uses to judge the quality of a physician’s work and character as well as their salary compensation.  It is considered basic Customer Service 101.

I admit I’m one of those late doctors. I don’t share the reasons why I’m late with my patients as I enter the exam room apologizing for my tardiness. Taking time to explain takes time away from the task at hand: taking care of the person sitting or lying in front of me. At that moment, they are the most important person in the world to me. More important than the six waiting to see me, more important than the several dozen emails and calls waiting to be returned, more important than the fact I missed lunch or need to go to the bathroom, more important even than the text message from my daughter from school or the worry I carry about my dying mother.

I’m a salaried doctor, just like more and more of my primary care colleagues these days, providing more patient care with fewer resources. I don’t earn more by seeing more patients. There is a work load that I’m expected to carry and my day doesn’t end until that work is done. Some days are typically a four patient an hour schedule, but most days my colleagues and I must work in extra patients triaged to us by careful nurse screeners, and there are only so many minutes that can be squeezed out of an hour so patients end up feeling the pinch. I really want to try to go over the list of concerns some patients bring in so they don’t need to return to clinic for another appointment, and I really do try to deal with the inevitable “oh, by the way” question when my hand is on the door knob. Anytime that happens, I run later in my schedule, but I see it as my mission to provide essential caring for the “most important person in the world” at that moment.

The patient who is angry about waiting for me to arrive in the exam room can’t know that I’m late because the previous patient just found out that her upset stomach was caused by an unplanned and unwanted pregnancy. Perhaps they might be more understanding if they knew that an earlier patient came in with severe self injury so deep it required repair. Or the woman with a week of cough and new rib pain with a deep breath that could be a simple viral infection is showing signs of a pulmonary embolism caused by oral contraceptives. Or the man with blood on the toilet paper after a bowel movement finding out he has sexually transmitted anal warts when he’s never disclosed he has sex with other men, or the woman with bloating whose examination reveals an ominous ovarian mass, or finding incidental needle tracks on arms during an evaluation for itchiness, which leads to a suspicion of undiagnosed chronic hepatitis.

Doctors running late are not being inconsiderate, selfish or insensitive to their patients’ needs. Quite the opposite. We strive to make our patients feel respected, listened to and cared for. Most days it is a challenge to do that well and stay on time. For those who say we are being greedy, so we need to see fewer patients, I respond that health care reform and salaried employment demands we see more patients in less time, not fewer patients in more time. The waiting will only get longer as more doctors hang up their stethoscopes rather than become a target of anger and resentment as every day becomes “doctor season.”

Patients need to bring a book or catch up on correspondence,  bring knitting, schedule for the first appointment of the day. They also need to bring along a dose of charitable grace when they see how crowded the waiting room is. It might help to know you are not alone in your worry and misery.

But your doctor and health care team is very alone, scrambling to do the very best healing they can in the time available.

I’m not hanging my stethoscope up anytime soon though some days I’m so weary by the end, I’m not sure my brain between the ear tips is still functioning. I don’t wear a bullet proof white coat since I refuse to be defensive. If it really is doctor season, I’ll just continue on apologizing as I walk into each exam room, my focus directed to the needs of the “most important person in the whole world.”

And that human being deserves every minute I can give them.

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A Crack in Everything

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The birds they sang
At the break of day
Start again
I heard them say
Don’t dwell on what
Has passed away
Or what is yet to be

Ah the wars they will
Be fought again
The holy dove
She will be caught again
Bought and sold
And bought again
The dove is never free

You can add up the parts
but you won’t have the sum
You can strike up the march,
there is no drum
Every heart, every heart
to love will come
but like a refugee.

Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.
~Leonard Cohen from “Anthem”

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Our cracks expand with age:
do they not heal as quickly
or are we more brittle than before?

I know how my eyes leak,
my heart feels more porous.
The events of the day break me open even wider.

Let the light pour in
and illuminate our wounds old and new.
Let the world know
that from the hurt comes healing.

May we become the perfect offering.

 

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Supposing It Didn’t

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“Supposing a tree fell down, Pooh, when we were underneath it?”

“Supposing it didn’t,” said Pooh after careful thought.

Piglet was comforted by this.
~A.A. Milne

 

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It is the final week of a very long academic year and tension is running high.

Among those students to whom I provide care,
there are many who dwell deeply in “what if?” mode,
immobilized in their anticipation of impending disaster.

I understand this line of thinking,
particularly in this day and age of
“in the moment” tragedy
played out real-time in the palm of our hand
and we can’t help but watch as it unfolds.

Those who know me well
know I can fret and worry
better than most.
Medical training only makes it worse.
It teaches one to think catastrophically.
That is what I do for a living,
to always be ready for the worse case scenario.

When I rise, sleepless,
to face a day of uncertainty
as we all must do at times~
after careful thought,
I reach for the certainty I am promised
over the uncertainty I can only imagine:

What is my only comfort in life and in death?
That I am not my own, but belong
—body and soul, in life and in death—
to my faithful Savior, Jesus Christ.

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“Supposing it didn’t” — He says to reassure us.

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Fully Sufficient

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There are a thousand thousand reasons to live this life, every one of them sufficient.
Marilynne Robinson in Gilead

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There are a thousand thousand people on any given day who cannot think of one sufficient reason to live this life.
There are a few thousand who will decide this is their last day.
There are a few who say goodbye.

It is enough for me to find just one reason to live today.
It is enough for me to help someone else find just one reason today.
One is enough.
Fully sufficient.

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When the Storm Passes

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This has been a wild weather month on the outside:

heavy winds at times, damaging hale storms, snowfall covering the foothills, sweaty sunny middays, torrential unpredictable showers, ankle-deep mud.

And inside my cranium:

words that flew out too quickly, anxiety mixed with a hint of anger, too easy tears, searing frustration, feeling immobilized by the daily muck and mire.

The unpredictable month of May needs no explanation for acting like October, December and August within a span of a few hours.  I am not so easily forgiven or unburdened.  I end up lying awake at night with regrets, composing apologies, and wanting to hide under a rock until the storm blows over.

But in the midst of all the extremes, while the storm is raging, a miracle takes place:
it can only happen when brilliant light exposes weeping from heavy laid clouds, like the rainbow that dropped from heaven last week to touch the earth right in our backyard, only a few feet from our barn.

God cries too.  His wept tears have lit up the sky in a promise of forgiveness.
He assures us: this storm too will pass.

He assures us because He knows we need it.

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Angels in the Wilderness

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…any father, particularly an old father, must finally give his child up to the wilderness and trust to the providence of God.

It seems almost a cruelty for one generation to beget another when parents can secure so little for their children, so little safety, even in the best circumstances. Great faith is required to give the child up, trusting God to honor the parents’ love for him by assuring that there will indeed be angels in that wilderness.
~Marilynne Robinson, Gilead

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This is a reassuring truth:  watching our children leave our home to a life of their own, I trusted in God’s providence there would be angels in the wilderness waiting to guide them (and indeed there have been and continue to be).

In turn, every day as I head to work in my clinic, I have opportunity to be an angel in the wilderness for children who have left their parents’ home and are seeking out their own path, sometimes choosing one that is twisting, rocky, full of pitfalls and perilous. 

Despite my own weariness, holding this perspective helps me greet each new face with a mother’s embrace.

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