If I can stop one heart from breaking, I shall not live in vain; If I can ease one life the aching, Or cool one pain, Or help one fainting robin Unto his nest again, I shall not live in vain. ~Emily Dickinson
So if there is any encouragement in Christ, any comfort from love, any participation in the Spirit, any affection and sympathy, complete my joy by being of the same mind, having the same love, being in full accord and of one mind. …. in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others. ~Philippians 2: 1-4
Walk in a manner worthy of the calling to which you have been called, with all humility and gentleness, with patience, bearing with one another in love, eager to maintain the unity of the Spirit in the bond of peace. Ephesians 4: 1-3
By wearing a mask…
If I can stop one person from infection, I shall not live in vain; If I can ease another’s worry, Though masking goes against the grain, Or help a divided country be Restored to health again, I shall not live in vain.
I don’t know if you ever saw a doubt. In fact, I doubt you did. They’re shape shifting little shadows and they’re more than often hid.
You could hear them on the whirling winds, that whistled through the farm. You could feel them in your stomach or brush the goosebumps of your arm.
You’d hear them giggling in the corners, in the darkness of the night. They’re the wobble in the voice that claims that things will be all right.
And the little doubts got larger, until they no longer hid in holes. They now lived out amongst them and they slipped into their souls.
I know good times are coming back. I know the sun will rise. I know the hard earth soon will soften, and plants will bloom before our eyes.
There will be colour in the meadows and the river will unfreeze. But if we’re to move beyond this moment then these fiendish doubts must leave.
We need hopeful stories more than ever, we should tell them till we’re blue. We should tell them till we look outside and see that they’ve come true.
And the doubts that wreak such havoc, they were nowhere to be seen. And the fear they’d brought forth with them felt so much like a dream.
So remember, little sister, take courage with you when you sleep. For tomorrow we might all need it, for the little doubts that creep. ~Tomos Roberts from “Doubts that Creep”
These days doubt is more epidemic than the COVID virus.
No one trusts anyone to tell the truth any longer and truth itself is up for grabs. Experts are suspect, while government agencies and their spokespersons surely must be part of a larger conspiracy.
It’s an “every man for himself” attitude with everyone doing what is right in their own eyes.
You can see where doubts leave us: we end up in a wintry forsaken place that looks, feels and frankly, is hopeless.
The most recent weeks have been difficult as most students start school at home again rather than in classrooms and no one is happy about it. Churches have been meeting online or outside and will need to make a difficult transition to limited indoor worship services that won’t feel familiar. Businesses continue to suffer the effects of people having less income to spend, and unwillingness to spend on anything but essentials.
A pandemic virus wreaks havoc with society but stories sowing doubts and mistrust are far more damaging. Rather than working together for solutions, we as a society have become more divided and divisive than ever.
When I speak with those whose well-being I care deeply about, yet who don’t trust my opinion or any medical opinion for that matter, my voice wobbles with concern. If I, as a caring friend and physician for forty years can’t be trusted, then whom will they trust?
A virus doesn’t give a rip what our politics are – it is an equal-opportunity opportunist seeking which cell to invade next. “Going viral” is yet another real life lesson in exponential multiplication, whether a packet of RNA or a social media meme or youtube link sowing mistrust and discord as it is shared millions of times and spreads with our help and consent.
We can’t allow creeping doubts to metastasize into a hopelessness cancer that is terminal.
We need hopeful stories, now more than ever. We need to take courage with us when we lay ourselves down to sleep, and dream the dreams of a better day on the horizon. We need truth that is not up for grabs to the highest bidder but is steadfast, transparent and … true.
Until then, we all should keep our masks on to stop the spread and protect others. It surely can’t hurt.
Try as I might to hold fear and suffering to the periphery of my vision, it is difficult to keep them there; like a morning fog clutching at the ground, bad news creeps out and covers everything, distorting truth and color and light, yet so seductive by softening the rough edges until reality hits.
Maybe I can turn away Maybe it won’t reach me Maybe it is all mirage, someone’s imagining.
Still, I can no longer be mere audience to the events of the day, too weak in the knees to do anything. The trouble that lies beyond this hill touches us all.
I kneel in silent witness: to wait, to listen, to pray for a flood of stillness to cover us.
I used to think the land had something to say to us, back when wildflowers would come right up to your hand as if they were tame.
Sooner or later, I thought, the wind would begin to make sense if I listened hard and took notes religiously. That was spring.
Now I’m not so sure: the cloudless sky has a flat affect and the fields plowed down after harvest seem so expressionless, keeping their own counsel.
This afternoon, nut tree leaves blow across them as if autumn had written us a long letter, changed its mind, and tore it into little scraps. ~Don Thompson October
We’re in a time of seasonal abundance but our emotions are spent from containment through lock-down, shelter-in, social distancing, zoom-in and zoom-out.
As I meet with my patients via a televisit, I try to read their faces and find that along with the flatness of our screens, our emotions are flat too. My usual gentle humor to lighten things up becomes pointless – it is hard to elicit smiles these days. On the other hand, there no longer is a need for abundant tissues for tearful conversations because no one will weep on screen. There may be a hint of emotion in a catch in a voice, but I have yet to see anyone actually cry in two months of telehealth conversations. That would be too vulnerable – somehow being on camera suggests we need to put the actor-mask on, be expression-less, strong and invulnerable. And somehow my patient knows I can’t reach out as I would in an exam room, literally and verbally, to reassure them I’m present and listening. I’m not really present on a screen even though I’m listening.
And while out in society, we must literally hide ourselves behind a mask that conceals our smiles as well as our grim-faced frowns.
So our social and clinical interactions are as flat as the screens they play out on.
We need some unchecked tears about now, as well as endless belly laughs. Perhaps there will be a reawakening to the range of emotions we have taken for granted before finding ourselves in this time of restraint and restriction.
As we reintegrate and reunite, slowly, carefully and compassionately, let us re-experience in 3-D what we have been missing in our virtual meetings: tears that accompany joyous reunion as well as the lament of all we’re lost during this time.
Good things as well as bad, you know, are caught by a kind of infection.
If you want to get warm you must stand near the fire: if you want to be wet you must get into the water. If you want joy, power, peace, eternal life, you must get close to, or even into, the thing that has them.
They are not a sort of prize which God could, if He chose, just hand out to anyone. They are a great fountain of energy and beauty spurting up at the very centre of reality. If you are close to it, the spray will wet you: if you are not, you will remain dry.
Once a man is united to God, how could he not live forever? Once a man is separated from God, what can he do but wither and die? ~C.S. Lewis- Mere Christianity
As society becomes more divided about how to manage continued COVID pandemic spread with new long-term medical complications among young and old — I wonder what is it that is truly infecting us aside from a tiny packet of RNA?
We are willing to believe almost anything without verification if it suits our previously held viewpoints; we can’t discern truth from fiction if it appears in a youtube video or a clickable headline.
The forces of evil are using a virus to divide and conquer good and well- meaning people who become infected without realizing it, spreading a contagion of suspicion, distrust and conspiracy theories.
Out of caution, as I’ve done for forty years inside the walls of my clinic, I now glove and mask outside the clinic to prevent me from inadvertently infecting others. Just as it has been during my whole professional career, taking those precautions doesn’t infringe on my rights nor does it harm me. It simply shows my careful consideration for others around me. Yet, more than ever, I am unwillingly exposed to the sad reality of this fallen fragile world through the angry words and deeds of others.
Instead, I want to be infected and contagious with the reality of God. I seek out the life-saving vaccination of God’s Word: eternal, unchanging and 100% effective.
If I’m to be contagious to others, let it be because I’m overwhelmed with the Spirit, not dangling helplessly by a mere thread in a pandemic spread of suspicion and distrust.
You can hide nothing from God. The mask you wear before men will do you no good before Him. He wants to see you as you are, He wants to be gracious to you. You do not have to go on lying to yourself and your brothers, as if you were without sin; you can dare to be a sinner. ~Dietrich Bonhoeffer from Life Together
In your hands
The dog, the donkey, surely they know They are alive. Who would argue otherwise?
But now, after years of consideration, I am getting beyond that. What about the sunflowers? What about The tulips, and the pines?
Listen, all you have to do is start and There’ll be no stopping. What about mountains? What about water Slipping over rocks?
And speaking of stones, what about The little ones you can Hold in your hands, their heartbeats So secret, so hidden it may take years
When I myself go to the doctor, I am to trust I’m seeing someone who is meant to know me thoroughly enough that he or she will help me move out of illness into better health. This is how acceptance feels: trusting someone enough to come out of hiding.
As a physician myself, I am reminded by the amount of “noticing” I need to do in the course of my work. Each patient, and there are so many, deserves my full attention for the few minutes we are together. I start my clinical evaluation the minute we sit down together and I begin taking in all the complex verbal and non-verbal clues offered up, sometimes unwittingly, by another human being.
Now, during the COVID19 pandemic, my interactions with patients are all “virtual” so I don’t have the ability to observe as I usually do, so I need them to tell me outright what is going on in their lives, their minds and their hearts in spoken or written words. I can’t ‘see’ them, even on a screen, in the same way.
How might someone call out to me when their faces are hidden?
I can’t witness first hand the trembling hands, their sweatiness, the scars of self injury. Still, I am their audience and a witness to their struggle; even more, I must understand it in order to best assist them. My brain must rise to the occasion of taking in another person, accepting them for who they are, offering them the gift of compassion and simply be there for them, just them, right now.
God doesn’t struggle in His Holy work as I do in my clinical duties. He knows us thoroughly because He made us; He knows our thoughts before we put them into words. There is no point in staying hidden from Him.
He holds us, little pebbles that we are, in His Hand, and He discerns our secret heartbeats.
We, the hidden, are His.
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
I will search in the silence for your hiding place. In the quiet, Lord, I seek your face. Where can I discover the wellsprings of your love? Is my search and seeking in vain? How can I recover the beauty of your word? In the silence I call out your name. Where can I find shelter to shield me from the storm? To find comfort, though dark be the night? For I know that my welfare is ever in your sight. In the shadows I long for your light. Lead me in your footsteps along your ancient way. Let me walk in the love of the Lord. Your wisdom is my heart’s wealth, a blessing all our days. In the silence I long for Your world. ~Liam Lawton
Your days are short here; this is the last of your springs. And now in the serenity and quiet of this lovely place, touch the depths of truth, feel the hem of Heaven. You will go away with old, good friends. And don’t forget when you leave why you came. ~Adlai Stevenson, to the Class of ’54 Princeton University
I was eight years old in June 1963 when the Readers’ Digest arrived in the mail inside its little brown paper wrapper. As usual, I sat down in my favorite overstuffed chair with my skinny legs dangling over the side arm and started at the beginning, reading the jokes, the short articles and stories on harrowing adventures and rescues, pets that had been lost and found their way home, and then toward the back came to the book excerpt: “The Triumph of Janis Babson” by Lawrence Elliott.
Something about the little girl’s picture at the start of the story captured me right away–she had such friendly eyes with a sunny smile that partially hid buck teeth. This Canadian child, Janis Babson, was diagnosed with leukemia when she was only ten, and despite all efforts to stop the illness, she died in 1961. The story was written about her determination to donate her eyes after her death, and her courage facing death was astounding. Being nearly the same age, I was captivated and petrified at the story, amazed at Janis’ straight forward approach to her death, her family’s incredible support of her wishes, and especially her final moments, when (as I recall 54 years later) Janis looked as if she were beholding some splendor, her smile radiant.
”Is this Heaven?” she asked. She looked directly at her father and mother and called to them: “Mommy… Daddy !… come… quick !”
And then she was gone. I cried buckets of tears, reading and rereading that death scene. My mom finally had to take the magazine away from me and shooed me outside to go run off my grief. How could I run and play when Janis no longer could? It was a devastating realization that a child my age could get sick and die, and that God allowed it to happen.
Yet this story was more than just a tear-jerker for the readers. Janis’ final wish was granted –those eyes that had seen the angels were donated after her death so that they would help another person see. Janis had hoped never to be forgotten. Amazingly, she influenced thousands of people who read her story to consider and commit to organ donation, most of whom remember her vividly through that book excerpt in Readers’ Digest. I know I could not sleep the night after I read her story and determined to do something significant with my life, no matter how long or short it was. Her story influenced my eventual decision to become a physician. She made me think about death at a very young age as that little girl’s tragic story could have been mine and I was certain I could never have been so brave and so confident in my dying moments.
Janis persevered with a unique sense of purpose and mission for one so young. As a ten year old, she developed character that some people never develop in a much longer lifetime. Her faith and her deep respect for the gift she was capable of giving through her death brought hope and light to scores of people who still remember her to this day.
Out of the recesses of my memory, I recalled Janis’ story a few years ago when I learned of a local child who had been diagnosed with a serious cancer. I could not recall Janis’ name, but in googling “Readers’ Digest girl cancer story”, by the miracle of the internet I rediscovered her name, the name of the book and a discussion forum that included posts of people who were children in the sixties, like me, who had been incredibly touched by Janis when they read this same story as a child. Many were inspired to become health care providers like myself and some became professionals working with organ donation.
Janis and family, may you know the gift you gave so many people through your courage in the midst of suffering, and the resulting hope in the glory of the Lord. Your days were short here, but you touched the depth of truth and touched the hem of heaven. ~~the angels are coming indeed.
We who have been your old good friends, because of your story, have not forgotten how you left us and why you came in the first place.
For excerpts from “The Triumph of Janis Babson”, click here
If you want to identify me, ask me not where I live, or what I like to eat, or how I comb my hair, but ask me what I am living for, in detail, ask me what I think is keeping me from living fully for the thing I want to live for. ~ Thomas MertonfromMy Argument with the Gestapo
As a patient waiting to see my health care provider, I would adapt Merton’s template of personal revelation this way:
If you want to know who I am, ask me not about my insurance plan, or what is my current address, or whether I have a POLST on file, or whether I have signed the Notice of Privacy Practice, or whether I’ll accept a message on my phone — but ask me what I am most concerned about, in detail, ask me what I think is causing my symptoms and what I think is keeping me from eating healthy, exercising regularly, and choosing moderation in all things so that I can live fully for the thing I want to live for.
As a physician in the midst of a busy clinic day, I struggle to know who my patients are beyond their standard medical history and demographics. One of my goals in our primary care clinic, now sixteen years into electronic medical record (EMR) use, is to create a way for our patients to provide their personal history online to us via their password secured web portal. These are the questions our clinic staff may not have opportunity to ask or record during clinic visits. Having the patient personally document their social history and background for us to have in the chart –in essence, telling us their story in their own words–can be very helpful diagnostically and for individualizing the best treatment approach for each unique individual.
There needs to be an “About me” section in the EMR that would contain biographical and personal history information the patient could provide online via writing or video.
Tell us about yourself This is your own personal history in your own words to be added to your electronic medical record in the folder “About Me”. You can edit and add information at any time via this secure patient portal to update it.
We want to know your story. Only you can tell us what you think is most important for us as your health care providers to know about you. We may not always have the time to ask and document these detailed questions in a brief clinic visit, so we are asking for your help.
Why do we want to know your non-medical background as well as medical background?
We evaluate a patient’s symptoms of concern but we also are dedicated to helping our patients stay healthy life long. To assist us in this effort, it is very helpful to know as much about you as possible, in addition to your past medical history. It is crucial also to understand your family background and social history. We want to know more about your personal goals, and what you think may be preventing you right now from living fully for the things you consider most important to you.
This is your opportunity to tell us about yourself, with suggested questions below that you can consider answering. This information is treated as a confidential part of your medical record, just like all information contained in your record. You can add more at any time by returning to this site.
1) Tell us about your family—who raised you and grew up with you, and who currently lives with you– including your racial/ethnic/cultural heritage. If relevant, tell us whether you have biological beginnings outside of your family (e.g. adopted, egg donation, surrogate pregnancy, artificial insemination, in vitro fertilization) Provide information on any illnesses in your biologic family.
2) List the states or countries you have lived in, and what countries outside the U.S. you have lived in longer than a month. Have you served in the military or another government entity, like the Peace Corps?
3) Tell us about your educational and job background. This could include your schooling or training history, paid or volunteer work you’ve done. What are your hobbies, how do you spend your leisure time, what are your passions and future goals. Where do you see yourself in ten years?
4) Tell us about your sexual orientation and/or gender preference.
5) Tell us about your current emotional support system—who are you most likely to share with when things are going very well for you and especially when things are not going well.
6) Tell us about your spiritual background, whether you are part of a faith or religious community and if so, how it impacts your life.
7) Tell us what worries you most about your health.
8) What would you have done differently if you could change things in your life? What are you most thankful for in your life?
9) What else do you feel it is important for us to know about you?
Thank you for helping us get to know you better so we can provide medical care that best meets your unique needs.
As our clinic is moving to an updated EMR, I’m interested in hearing feedback from patients and health care providers. What additional questions would you want asked as part of personal history documentation in a medical record?
Electronic medical records allow us, as never before, the ability to share information securely between patients and their health care providers. Patients want to tell us their story and we want to know more about them.
It is time we asked them and truly listen to what they have to say.
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.