As a father steals into his child’s half-lit bedroom slowly, quietly, standing long and long counting the breaths before finally slipping back out, taking care not to wake her,
and as that night-lit child is fully awake the whole time, with closed eyes, measured breathing, savoring a delicious blessing she couldn’t name but will remember her whole life,
how often we feel we’re being watched over, or that we’re secretly looking in on the ones we love, even when they are far away, or even as they are lost in the sleep
no one wakes from—what we know and what we feel can fully coincide, like love and worry, like taking care in full silence and secrecy, like darkness and light together. ~David Graham “Listening for Your Name“
2 “How I long for the months gone by, for the days when God watched over me, 3 when his lamp shone on my head and by his light I walked through darkness! Job 29:2-3
Someone I loved once gave me a box full of darkness. It took me years to understand that this, too, was a gift. ~Mary Oliver, “The Uses of Sorrow”
The season of Lent is a box full of darkness given to us by Someone who loves us enough to watch over us even as we sleep.
The Light is already here but the darkness has not yet dissipated.
It takes a lifetime to understand, if we ever do: we are watched over as we watch over one another.
By opening the gift of darkness, we allow a Light in where none was before.
Light pours through the cracks of our sorrow and brokenness as we are watched with care, as we illuminate amid the shadows, as we are loved with the deepest of concern.
This year’s Lenten theme for Barnstorming:
God sees us as we are, loves us as we are, and accepts us as we are. But by His grace, He does not leave us where we are. ~Tim Keller
Another sleepless night I’m turning in my bed Long before the red sun rises In these early hours I’m falling again Into the river of my worries When the river runs away I find a shelter in your name
Jesus, only light on the shore Only hope in the storm Jesus, let me fly to your side There I would hide, Jesus
Hear my anxious prayer The beating of my heart The pulse and the measure of my unbelief Speak your words to me Before I come apart Help me believe in what I cannot see Before the river runs away I will call upon your name
Jesus, only light on the shore Only hope in the storm Jesus, let me fly to your side There I would hide, Jesus ~Elaine Rubenstein, Fernando Ortega
One’s mind runs back up the sunbeam to the sun… ~C.S. Lewis
We so easily forget from Whom and Where we come, the purpose for which we are created and sent forth, how bright and everlasting our origins. If we fail to live and serve as intended, it is from our own frailty, not that of the Creator.
When light shines so that others might see, we are simply the beam and not the source. The path leads back to the Triune God and we are but a mere pathway.
Once in your life you pass Through a place so pure It becomes tainted even By your regard, a space Of trees and air where Dusk comes as perfect ripeness. Here the only sounds are Sighs of rain and snow, Small rustlings of plants As they unwrap in twilight. This is where you will go At last when coldness comes. It is something you realize When you first see it, But instantly forget. At the end of your life You remember and dwell in Its faultless light forever. ~Paul Zimmer “The Place” from Crossing to Sunlight Revisited
I am astonished by an ever-changing faultless light and don’t want to ever forget my thirst for its illumination: slaked by such simple glories as transcendent orange pink a shift of shadows the ripeness of fluff about to let go, all giving me a glimpse of tomorrow over the horizon of today.
The sacred rights of mankind are not to be rummaged for, among old parchments, or musty records. They are written, as with a sun beam, in the whole volume of human nature, by the hand of the divinity itself; and can never be erased or obscured by mortal power. ~Alexander Hamilton, “The Farmer Refuted”
One’s mind runs back up the sunbeam to the sun… ~C.S. Lewis
We so easily forget from Whom and Where we come, the purpose for which we are created and sent forth, how bright and everlasting our origins. If we fail to live and serve as intended, it is our own failing, fault and responsibility, not that of the Creator.
When our light shines so that others see, we are the beam and not the source. The path leads back to the Son and the Father and we are a mere pathway.
You were the one for skylights. I opposed Cutting into the seasoned tongue-and-groove Of pitch pine. I liked it low and closed, Its claustrophobic, nest-up-in-the-roof Effect. I liked the snuff-dry feeling, The perfect, trunk-lid fit of the old ceiling. Under there, it was all hutch and hatch. The blue slates kept the heat like midnight thatch.
But when the slates came off, extravagant Sky entered and held surprise wide open. For days I felt like an inhabitant Of that house where the man sick of the palsy Was lowered through the roof, had his sins forgiven, Was healed, took up his bed and walked away. ~Seamus Heaney from Opened Ground.
These moments of summer revealed as if the roof has been ripped open and the light let in~ the veil is torn down and dark corners lit up in early morning glow~
the sky suddenly enters into unexpected spaces, an extravagant grace opens wide and the miraculous happens because we are bold enough to invite ourselves inside.
And as you sit on the hillside, or lie prone under the trees of the forest, or sprawl wet-legged on the shingly beach of a mountain stream, the great door, that does not look like a door, opens. ~Stephen Graham from The Gentle Art of Tramping
That great door opens on the present, illuminates it as with a multitude of flashing torches. ~Annie Dillard (in response to the Graham’s quote) from Pilgrim at Tinker Creek
When I pay attention (and usually I don’t), each day offers up a moment of illumination like a multitude of flashing torches, when we sense something beyond what is here and now.
It feels like an unspoken promise.
When I miss it, this opened door that is not a door~ too busy to notice- too blinded to see- having turned my face away, nevertheless it happens without my witness.
It saddens and gladdens my heart to know that it will be offered up again tomorrow, even though I once again may forget.
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.