a grim reality

The Covid-19 pandemic has touched each and every one of us in ways we couldn't have imagined just a few weeks ago. From disbelief to fear, from illness to exhaustion, from annoyance to anger to grief to guilt, it has invaded every aspect of our lives. We weren't prepared for schools and businesses to close. We believed our health care system was infallible. We never thought we'd have to worry about affording or procuring food and supplies. We thought we were pretty safe.

"Expectation is the root

of all heartache."

~William Shakespeare~

It has been a challenge to reconfigure our lives just when things were going so well for so many of us. It isn't easy to home school your children, or to work from home when you've never done it before. It's annoying, if not maddening, to have to clean and sanitize everything you come into contact with over and over again, to don a face mask every time you wander outside, to worry about every cough or sneeze. It's unsettling to witness family members and friends taking ill. It's downright scary to think it could happen to you.

But this is the worst thing, I think. Worse than social distancing. Worse than quarantine. Worse than watching the emergency room door close behind someone you love because you are not permitted to be with them in the hospital. Worse than abandoning them to their fate.

"Love knows not its own depth

until the hour of separation."

~Khalil Gibran~

The worst thing is knowing that the person you love may be left to suffer alone. That they could die unattended. That there will be no loving presence at their bedside to support and comfort them. No song or prayer to see them off. No funeral. No burial. At the end of life, they may be assigned a body bag in a refrigerated truck, and, as we learned just today...some will end up in a mass grave. A grim reality that offends everything we hold sacred.

As if it weren't hard enough to have watched family and friends fall ill, suffer, and die, how will we ever bear the heartbreak of coerced separation? The void of utter helplessness? How will we survive the tidal wave of bitterness, despair, and sorrow we feel?

What is the way through? How will we rise again? 

"I am wounded but not slain.

I will lay me down to bleed a while.

Then I will rise to fight again."

~John Dryden~

What would you do if someone you love died like this? How do you dignify and honor a life that passes abruptly, cruelly, unjustly? 

How do you want to be remembered if it happens to you?

"When someone you love
becomes a memory,
the memory becomes a treasure."
~author unknown~

jan

look for the helpers

Something changed for me this week. I downshifted from disbelief, frustration, even outrage, to sadness, a deep penetrating sense of helplessness and despair. Covid-19 hit a little too close to home.

One of the nurses I worked with for many years got sick...reminding me that most of my colleagues and friends are at high risk because of their age, or if they're still young enough to be working, because they are exposed to the virus every day. Without adequate PPE.

A friend who has diabetes, end-stage liver disease, and worsening heart failure was denied hospitalization because the risk of exposure to Covid-19 was too great, a certain death sentence.

A distant relative who lived in Italy took his own life this week for reasons we can only imagine.

My daughter's obstetrician recommended an elective induction next week so as to get her in and out of the hospital before the case load peaks where she lives...and before her husband is banned from the delivery room. Not to mention that today is her birthday.

My grandson missed his fifth birthday party today, too...

which is no big deal considering the incomprehensible toll the pandemic has taken on patients and their loved ones, on health care workers and first responders, on teachers and parents and the children they care for all around the world. Still...

"It is both a blessing and a curse 

to feel everything so very deeply."

~David Jones~

And then there's this. I'm used to being on the care-giving side of the equation...not on the receiving end. The thought that I would put someone at risk delivering my groceries, or running an errand for me, or, God forbid, taking care of me if I get sick...the thought of it worries me. It scares me. It saddens me. And, it leaves me feeling guilty...not being able to help, not being able to do my part with the skills I possess.

Instead, I've called all my closest family members and friends this week to check in on them. I've created get well cards and birthday cards, printed them out, and mailed them off without venturing into a store, or settling for e-cards (well, maybe one or two...). Why I've sat in mindful meditation for hours, launching loving kindness into the universe. You do what you can.

"Do what you can,

with what you have,

where you are."

~Theodore Roosevelt~

How is it going for you? Who and what are you caring for today? Remember to be kind and gentle with yourself, too. 

"When I was a boy

and I would see

scary things in the news,

my mother would say to me, 

'Look for the helpers.

You will always find people 

who are helping.'"

~Fred Rogers~

jan

how to acknowledge reality and still spread compassion

When the Covid-19 pandemic is just a memory, those of us who survive will all have stories to tell. They will include tales of fear, isolation, and sorrow. Some will recall moments of relief, laughter, and kindness. Most will never be told.

"O, what an untold world

there is in one human heart."

~Harriet Beecher Stowe~

It isn't too early to start sharing our stories. We all want to know how other people are coping with the crisis, what precautions they're taking to prevent the spread of the disease, how they're faring financially, how the homeschooling is going, where they're finding supplies. The list goes on...

But there is more to it than that.

As a physician, I would like to hear from people who have gotten sick, and from their caretakers. Were they at high risk? Did they smoke or vape? Did they have asthma, or emphysema? Were they diabetic, or immuno-compromised, or frail? Alcoholic? Homeless? Did they follow all the guidelines for preventing illness, or were they careless, or defiant? 

"Nothing ever goes away until

it teaches us what we need to know."

~Pema Chodron~

In other words, I want to know what sets me apart from them. I want to believe I'm less susceptible because I'm healthier, or younger, or more compliant with preventive measures. 

I want to know how they felt when they first got sick. What finally made them call the doctor, or go to the Emergency Room. I want to know how scared they are, or how depressed. How they're dealing with being separated from family and friends. What it must be like to miss a loved one's funeral. To postpone your wedding. To run out of money. 

Stories like these help the rest of us to monitor our own response to this crisis, to adjust our expectations, and confront our mistakes and misconceptions. To acknowledge reality. To spread compassion.

"Every one has a story to tell 

that will break your heart.

And, if you're really paying attention,

most people have a story 

that will bring you to your knees."

~Brene Brown~

Please don't underestimate the importance of telling YOUR story. Someone needs to hear it. Pick up the phone, or dash off an email. Put it out there on social media. Talk it over at dinner. When it comes to frustration, regret, fear, sorrow, and despair, we're all in this together. When what we need are courage, compassion, cooperation, patience, and surrender, it helps to be able to lean on one another. 

"It is both a blessing and a curse

to feel everything so very deeply."

~David Jones~

jan

pre-morbid reflections on Covid-19

I'm a physician, so I feel like I need to be out there with my colleagues caring for victims of the Covid-19 pandemic. There's one problem: I just became a card-carrying member of the Covid-19 High Risk Club, so I really can't.

Those of us who are in the high-risk category because of our age, an underlying medical condition, or the fact that we're immuno-suppressed are not necessarily more likely to pick up the virus than anyone else, but if we get it, we may not be able to mount an immune response to fight the infection. What might be a debilitating case of pneumonia to a young, healthy person can be fatal to someone who is immuno-compromised. And, in a worst case scenario, there simply are not enough ventilators to go around.

Remember that even though you may not be experiencing any symptoms...you may already have been exposed to the virus by someone else who appeared healthy, but may have transmitted it to you. Likewise, you can transmit it to the rest of us even though you still feel fine. "Sheltering in place" is probably the best course of action for all of us who can.

"Sometimes you just need to

lie on the couch

and read for a couple of years."

~hookedtobooks.com~

Trust me, it's not all that bad.

Remember all those jobs around the house you haven't had the time or energy to tackle? Now you have nothing but time and energy.

Remember that book you've always wanted to write, the poem that keeps running through your mind, the song you've been singing to yourself for so long, the picture you've been longing to paint? Now might be a good time to get started.

"Dancing, singing, storytelling, 

and silence

are the four universal

healing salves."

~Gabrielle Roth~

This is the perfect time to explore the gifts of meditation and yoga.

To get out and walk. Take your camera along.

To shoot some hoops with your kids, or prep your flower beds for spring. The possibilities are endless.

As for me, I'm hunkered down for the foreseeable future. That means I may have to miss the birth of my very first granddaughter...and my grandson's fifth birthday. I wish things didn't have to be this way, but...

~i2symbol.com

This is my wish for you:

May you be well.

May you be safe.

May you be happy.

May you dwell in peace

and loving kindness.

~jasrinsingh.com~

jan

the story of the present illness

The story of my life during the years leading up to my retirement could have been recorded in ten-minute sound bites, patient after patient, day after day. This was in keeping with the trend toward abbreviated discourse, 140 character tweets, and snarky comebacks that have come to replace the leisurely, thoughtful exchange of ideas that human beings have always enjoyed, and sometimes depended upon.

In medicine, the written or dictated patient note has been largely replaced by the electronic medical record (EMR). Nowadays, rather than narrating the patient’s story, you navigate his data base with a series of clicks that pull up a confusing array of bulleted lists, complicated charts, and sketchy details.

www.1stproviderschoice.com

This is intended to expedite what has been ruthlessly abridged to a ten-minute office visit. After all, as physicians, we have productivity quotients to meet and income to generate. That forces us to see more patients faster and to learn less about them at the same time.

It wasn’t always this way, though. There was a time, not many years ago, when I could scan my schedule for the day and envision every patient I was scheduled to see. I knew them that well.

With a quick glance at the chart, I was able to recall the patient who was getting ready to start chemo. She’d presented with palpitations and chest discomfort that could have required an extensive cardiac work-up. Instead, we discussed the anxiety she felt having watched her mother die of the same cancer despite having consented to the same treatment. My patient’s heart was fine. Her family history (a.k.a her story) made the diagnosis. Try teasing that information out of an EMR.

I knew instantly whose intractable headaches began the day she discovered the cigarette burn on the sweater her ten year-old wore to school that day. I could have run every test under the sun and prescribed every medication known to mankind, but unless we addressed the problem she was having with her child, nothing would have helped.

I remembered it because I'd asked about her family, she'd told me the story, and I'd written it into the chart.

This isn’t just idle chit-chat. It’s not a waste of time. In medical jargon, it’s called “the history of the present illness” but it could just as well be called “the story of the present illness.” And it should interest more than just writers. Research has shown that patients require fewer medications and fewer follow-up appointments when they are allowed, indeed encouraged, to tell their whole story. Patient satisfaction improves. And it improves the odds of getting the diagnosis right.

This should appeal to the CEO’s and CFO’s of hospital health systems because in the long run, it has been proven to save time and money.

Good history taking is the key to excellence in medical care. Every patient is embedded in a family, a community, and a culture, each of which affects his health. All patients experience illness in terms of their expectations, beliefs, and hopes. They know all about fear, shame, anger, guilt, and despair. Every one of them deserves our attention, respect, expertise, and honesty.

Each and every one of them has a story to tell and a lesson to teach. And that takes time.

"You are not your illness.
You have an individual story to tell.
You have a name, a history, a personality.
Staying yourself is part of the battle."
~Julian Seifte~

jan

here is something you should know

If you are a health care provider...or a patient...there is something you should know. Even the best among us sometimes misses the diagnosis. 

This week, I'm having dinner with a woman whose breast cancer I missed when I was her physician, twenty-some years ago. She'd come to me saying something didn't feel right to her, but I didn't find anything unusual when I examined her. No lump. No tenderness. No redness or swelling. No enlarged lymph nodes. I recommended keeping a close eye on things to see if anything changed. You see, her insurance wouldn't have covered a mammogram just because "something didn't feel right" to her, so I didn't order one. Sure enough, a couple of months later the lump appeared. All that time lost! I watched as she underwent surgery and radiation. I watched as she lost her hair to chemo. I felt guilty, ashamed, angry. There were no words for the apology I felt I owed her. No excuse for the system that failed her. Thankfully, she came through it cancer free, but still...

"First, do no harm."

~Hippocrates~

I never had a chance to apologize to another patient of mine who died of colon cancer after she presented with a small amount of rectal bleeding. It turned out her cancer was just beyond the reach of the flexible scope I had to use to evaluate her because her health insurance wouldn't cover a colonoscopy for patients like her who were at low risk.

Again, there are no words for what I felt.

"Wherever the art of medicine

is loved,

there is also love of humanity."

~Hippocrates~

Today my BFF called to tell me how her appointment went last week when she saw her orthopedist for a problem with low back, lower abdominal, and LLE pain that have plagued her for months. She has been under the care of her family physician, a rehab. specialist, a pain management specialist, and an orthopedist for for over a year to no avail. Last week I listened to her describe her symptoms again. We went over her history, revisited her X-rays and scans, and discussed the treatment plan that  included chronic opiate use and eight months of physical therapy that didn't help at all. I told her they were missing something. She needed a new set of eyes, as we say, to look at things from a fresh perspective. 

Yesterday her pain became so intense, she went to the Emergency Room. Sure enough, they saw something near her hip on the X-ray they took. A CT scan of the area demonstrated the culprit...a fracture of the pubic ramus that she has been bearing weight on for almost a year! 

A missed diagnosis can be a terrible thing. My cautionary note to providers and patients alike is this:

• Listen to your intuition. 
• Never say never. 
• Fight back when the (health insurance) system is fighting you.
• Never give up.
• Look at the world through new eyes every day.

"Medicines cure diseases,

but only doctors

can cure patients."

~Carl Jung~

jan

the elusive diagnosis

This week I heard two stories concerning protracted illnesses that went undiagnosed for months despite exhaustive work-ups by competent physicians.

One fell into the category of dysautomonia, a malfunction of the autonomic nervous system that affects the function of the cardiovascular, pulmonary, digestive, urinary, and adrenal systems. It hit a friend of mine who is a physician, herself, with such fatigue and weakness, gastrointestinal distress and weight loss, she couldn't work. The symptoms were bad enough, but the way she described it, not knowing what was wrong affected her even more. She fluctuated between frustration and fear. Between helplessness and hopelessness. Between anger and disbelief. She searched for any clue, anything that might have been missed, any glimmer of hope for a diagnosis. When she came across the condition known as "dysautomonia", she knew she'd nailed it...except that she never did discover the cause of it, and there was no cure. She learned that the condition sometimes runs its course over time for reasons no one understands. It took over a year for her.

Dysautomonia
~en.wikipedia.org~

The other case involved a healthy young man I know who suffered for months with fatigue, joint pain, headaches, and weakness. A complete work-up failed to make a diagnosis, so his doctor attributed his symptoms to some kind of flu-like illness, aggravated by the eighty hour weeks he was working. He cut back a bit, but that didn't help. Then, his blood pressure sky-rocketed. It affected his vision. Clearly, things were getting worse. He missed work. He started to worry about his job and his family. But what really scared him was the fact that his father had had hypertension and died of a ruptured aneurysm at just about his age. He went to another specialist where blood tests revealed a rare tick-borne illness (Erlichosis) that, after 6 weeks of treatment with IV antibiotics, still left him with residual pain and fatigue.

Lone Star Tick
~webmd.com~

When the best care available fails to produce a diagnosis and treatment plan, patients feel justifiably confused. Discouraged. Angry. But that's not what concerns them most. The hardest part is uncertainty and fear. What If I lose my job? How will I support my family? What if I never get better? What if I die?

This is a compelling reminder of the emotional impact of illness on the patient's story. Illness is more than a collection of symptoms, more than fever, pain, weight loss, swelling, or weakness. It penetrates every aspect of a person's life.

Rita Charon, MD, in her book "Narrative Medicine-Honoring the Stories of Illness", writes of the patient:

"...his emotional pain is intimately tied

 to his physical situation. It would be disruptive of his integrity as a self-with-a-body to pull apart those two aspects of his suffering, apportioning the discouragement and depression to the social worker and keeping the chest pain and shortness of breath for myself."

~excerpt from Chapter 9:

"Bearing Witness"~

You won't find "fear," "anger," "grief," or "despair" anywhere in the electronic medical record as signs or symptoms of dysautomonia or Erlichosis. Nevertheless, they are major contributors to the patient's presentation, clinical course, and prognosis. They are part of the patient's search for meaning, and his perspective on the self. In order to treat the whole person--body, mind, and spirit--we need to know what he is thinking and feeling. In order for him to heal, we need to know his whole story.

"It is more important to know

what sort of person has a disease

than to know

what sort of disease a person has."

~Hippocrates~

jan