Experiencing the present purely is being emptied and hollow; you catch grace as a man fills his cup under a waterfall. ~Annie Dillard from Pilgrim at Tinker Creek
I am often unprepared for the rush of challenges each clinic day brings. Each call, each message, each tug on my arm, each box of kleenex handed over, each look of desperate hopelessness — I empty out continuously throughout the day to try to fill the gaping holes I see.
If I’m down and dry, hollowed to the core with no more left to give, I pray for more than I could possibly deserve.
And so it pours over me, torrential and flooding, and I only have a mere cup to hold out for filling. There is far more cascading grace than I can even conceive of, far more love descending than this cup of mine could ever hold, far more hope ascending from the mist and mystery of doctoring, over and over again.
I am never left empty for long, grateful for hallowed hollows.
The heart of a woman goes forth with the dawn, As a lone bird, soft winging, so restlessly on, Afar o’er life’s turrets and vales does it roam In the wake of those echoes the heart calls home. ~Georgia Douglas Johnson from The Heart of a Woman and Other Poems
There are some days, as I look at what must be accomplished, I just fling my heart out ahead of me in the hope I might catch up with it and bring it back home before the sun goes down.
It is a race to see if anyone else rescues it first or if anyone even notices it out there fluttering its way through the day.
Perhaps, once flung with the dawn, it will keep winging its way home and I’ll find it patiently waiting there for me when I return tonight through the door.
…Then how his muffled armies move in all night And we wake and every road is blockaded Every hill taken and every farm occupied And the white glare of his tents is on the ceiling. And all that dull blue day and on into the gloaming We have to watch more coming.
Then everything in the rubbish-heaped world Is a bridesmaid at her miracle. Dunghills and crumbly dark old barns are bowed in the chapel of her sparkle. The gruesome boggy cellars of the wood Are a wedding of lace Now taking place. ~Ted Hughes from “Snow and Snow”
I wish one could press snowflakes in a book like flowers. ~James Schuyler from “February 13, 1975”
It’s true that three snow days in a row is unprecedented in our part of the world. Being snowbound by driveway-blocking drifts has its advantages until it isn’t fun any longer and means even more work to be done both on and off the farm, especially for a physician stranded from her closed clinic.
I’ve been doing my best taking care of our clinic’s patients via messaging, text and other media, but there is a limit to my virtual reach: I can’t palpate a tender belly, or feel swollen lymph nodes or listen to someone’s palpitations, though it is a little easier to discern despair, anticipate anxiety and work out someone’s worries from afar.
But I do have a view of the wedding lace of our woods and the sparkling chapels made of our tired old barns and buildings on the farm. I’m reminded that even I can be dressed up with a covering as white as snow. So lovely to look at, if only to be preserved for the long summer days that lie ahead — a wilting snowflake pressed into a book like a flower remembered, its fragrance still attached.
Sometimes when I watch trees sway, From the window or the door. I shall set forth for somewhere, I shall make the reckless choice Some day when they are in voice And tossing so as to scare The white clouds over them on. I shall have less to say, But I shall be gone. ~Robert Frost from “The Sound of Trees”
There is a thing in me that dreamed of trees, A quiet house, some green and modest acres A little way from every troubling town, Al little way from factories, schools, laments. I would have time, I thought, and time to spare, With only streams and birds for company, To build out of my life a few wild stanzas. And then it came to me, that so was death, A little way away from everywhere. ~Mary Oliver from “A Dream of Trees” from New and Selected Poems
As I wind down my work load, for once sharing the calls at night, and allowing others to manage the day time urgencies,
I wonder if I shall have less to say, and whether I will become less myself.
A life of non-stop doctoring means having little time for anything else. Soon I will have time and time to spare.
I wonder about the trees and how To build out of my life a few wild stanzas.
The thing to cling to is the sense of expectation. Who knows what may occur in the next breath? In the pallor of another morning we neither Anticipated nor wanted! … we live in wonder, Blaze in a cycle of passion and apprehension Though once we lay and waited for a death. ~Carolyn Kizer from “Lines to Accompany Flowers For Eve”
Over seventy years ago my maternal grandmother, having experienced months of fatigue, abdominal discomfort and weight loss, underwent exploratory abdominal surgery, the only truly diagnostic tool available at the time. One brief look by the surgeon told him everything he needed to know: her liver and omentum were riddled with tumor, clearly advanced, with the primary source unknown and ultimately unimportant. He quickly closed her up and went to speak with her family – my grandfather, uncle and mother. He told them there was no hope and no treatment, to take her back home to their rural wheat farm in the Palouse country of Eastern Washington and allow her to resume what activities she could with the time she had left. He said she had only a few months to live, and he recommended that they simply tell her that no cause was found for her symptoms.
So that is exactly what they did. It was standard practice at the time that an unfortunate diagnosis be kept secret from terminally ill patients, assuming the patient, if told, would simply despair and lose hope. My grandmother passed away within a few weeks, growing weaker and weaker to the point of needing rehospitalization prior to her death. She never was told what was wrong and, more astonishing, she never asked.
But surely she knew deep in her heart. She must have experienced some overwhelmingly dark moments of pain and anxiety, never hearing the truth so that she could talk about it with her physician and those she loved. But the conceit of the medical profession at the time, and indeed, for the next 20-30 years, was that the patient did not need to know, and indeed could be harmed by information about their illness.
We modern more enlightened health care professionals know better. We know that our physician predecessors were avoiding uncomfortable conversations by exercising the “the patient doesn’t need to know and the doctor knows better” mandate. The physician had complete control of the health care information–the details of the physical exam, the labs, the xray results, the surgical biopsy results–and the patient and family’s duty was to follow the physician’s dictates and instructions, with no questions asked.
Even during my medical training in the seventies, there was still a whiff of conceit about “the patient doesn’t need to know the details.” During rounds, the attending physician would discuss diseases right across the hospital bed over the head of the afflicted patient, who would often worriedly glance back and worth at the impassive faces of the intently listening medical student, intern and resident team. There would be the attending’s brief pat on the patient’s shoulder at the end of the discussion when he would say, “someone will be back to explain all this to you.” But of course, none of us really wanted to and rarely did.
Eventually I did learn how important it was to the patient that we provide that information. I remember one patient who spoke little English, a Chinese mother of three in her thirties, who grabbed my hand as I turned to leave with my team, and looked me in the eye with a desperation I have never forgotten. She knew enough English to understand that what the attending had just said was that there was no treatment to cure her and she only had weeks to live. Her previously undiagnosed pancreatic cancer had caused a painless jaundice resulting in her hospitalization and the surgeon had determined she was not a candidate for a Whipple procedure. When I returned to sit with her and her husband to talk about her prognosis, I laid it all out for them as clearly as I could. She thanked me, gripping my hands with her tear soaked fingers. She was so grateful to know what she was dealing with so she could make her plans, in her own way.
Forty years into my practice of medicine, I now spend a significant part of my patient care time providing information that helps the patient make plans, in their own way. I figure everything I know needs to be shared with the patient, in real time as much as possible, with all the options and possibilities spelled out. That means extra work, to be sure, and I spend extra time on patient care after hours more than ever before in my efforts to communicate with my patients. I’m not alone as a provider who feels called to this sharing of the medical chart – the nationwide effort is referred to as Open Notes.
Every electronic medical record chart note I write is sent online to the patient via a secure password protected web portal, usually from the exam room as I talk with the patient. Patient education materials are attached to the progress note so the patient has very specific descriptions, instructions and further web links to learn more about the diagnosis and my recommended treatment plan. If the diagnosis is uncertain, then the differential is shared with the patient electronically so they know what I am thinking. The patient’s Major Problem List is on every progress note, as are their medications, dosages and allergies, what health maintenance measures are coming due or overdue, in addition to their “risk list” of alcohol overuse, recreational drug use including marijuana, eating and exercise habits and tobacco history. Everything is there, warts and all, and nothing is held back from their scrutiny.
Within a few hours of their clinic visit, they receive their actual lab work and copies of imaging studies electronically, accompanied by an interpretation and my recommendations. No more “you’ll hear from us only if it is abnormal” or “it may be next week until you hear anything”. We all know how quickly most lab and imaging results, as well as pathology results are available to us as providers, and our patients deserve the courtesy of knowing as soon as we do, and now regulations insist that we share the results. Waiting for results is one of the most agonizing times a patient can experience. If it is something serious that necessitates a direct conversation, I call the patient just as I’ve always done. When I send electronic information to my patients, I solicit their questions, worries and concerns by return message. All of this electronic interchange between myself and my patient is recorded directly into the patient chart automatically, without the duplicative effort of having to summarize from phone calls.
Essentially, the patient is now a contributor/participant in writing the “progress” (or lack thereof) note in the electronic medical chart.
In this new kind of health care team, the patient has become a true partner in their illness management and health maintenance because they now have the information to deal with the diagnosis and treatment plan. I don’t ever hear “oh, don’t bother me with the details, just tell me what you’re going to do.”
My patients are empowered in their pursuit of well-being, whether living with chronic illness, or recovering from acute illness. No more secrets. No more power differential. No more “I know best.”
After all, it is my patient’s life I am impacting by providing them open access to the self-knowledge that leads them to a better appreciation for their health and and clearer understanding of their illnesses.
As a physician, I am impacted as well; it is a privilege to live and work in an age where such illumination in a doctor~patient relationship is possible.
Tired and hungry, late in the day, impelled to leave the house and search for what might lift me back to what I had fallen away from, I stood by the shore waiting. I had walked in the silent woods: the trees withdrew into their secrets. Dusk was smoothing breadths of silk over the lake, watery amethyst fading to gray. Ducks were clustered in sleeping companies afloat on their element as I was not on mine.
I turned homeward, unsatisfied. But after a few steps, I paused, impelled again to linger, to look North before nightfall-the expanse of calm, of calming water, last wafts of rose in the few high clouds.
And was rewarded: the heron, unseen for weeks, came flying widewinged toward me, settled just offshore on his post, took up his vigil. If you ask why this cleared a fog from my spirit, I have no answer. ~Denise Levertov “A Reward” from Evening Train.
~Lustravit lampade terras~ (He has illumined the world with a lamp) The weather and my mood have little connection. I have my foggy and my fine days within me; my prosperity or misfortune has little to do with the matter. – Blaise Pascal from “Miscellaneous Writings”
And so you have a life that you are living only now, now and now and now, gone before you can speak of it, and you must be thankful for living day by day, moment by moment … a life in the breath and pulse and living light of the present… ~Wendell Berry from Hannah Coulter
Worry and sorrow and angst are more contagious than the flu. I mask up and wash my hands of it throughout the day. There should be a vaccination against unnamed fears.
I want to say to my patients and to myself: Stop now, this moment in time. Stop and stop and stop.
Stop needing to be numb to all discomfort. Stop resenting the gift of each breath. Just stop. Instead, simply be.
I want to say: this moment, foggy or fine, is yours alone, this moment of weeping and sharing and breath and pulse and light.
Shout for joy in it. Celebrate it.
Be thankful for tears that can flow over grateful lips just as rain can clear the fog. Stop holding them back.
Just be– be blessed in both the fine and the foggy days– in the now and now and now.