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

variations on a theme

Let’s say you have three patients who are battling cancer.

One is devastated by the diagnosis. She is overwhelmed by fear and dread. Convinced her situation is hopeless, she resists starting chemo. She just wants to die. Her doctor suggests an anti-depressant.

"Once you choose hope,

anything is possible."

~Christopher Reeve~~

One is a man of deep faith. He is convinced that God has the power to cure him even though his prognosis is unfavorable. He devotes himself to prayer and sacrifice because he believes that will earn him God’s mercy. Even when his cancer spreads, he clings to his faith. It gives him hope and a sense of optimism right up until he is forced to surrender to the disease. His doctor tries to be respectful of his faith, but he can’t shake off his own doubts about it.

"Cancer didn't bring me

to my knees.

It brought me to my feet."

~Michael Douglas~

The other patient is f***ing pissed off about it. She is not about to lose this battle. After all, she has a husband and children at home. It isn’t fair to them. She agrees to an aggressive plan of treatment that includes surgery, radiation and chemotherapy. She begins a program of exercise, diet, and meditation, and she adopts a practice of loving self-care. She is determined to beat this thing. Her doctor encourages her even though he doesn't indulge in self-care, himself.

"You never know how strong you are

until being strong is

the only choice you have."

~Bob Marley~

Three different patients with the same disease, and three different stories. What difference does it make? There is an abundance of literature concerning the factors that affect a patient’s quality of life during treatment for cancer and how this correlates with his likelihood of recovery. Some factors are immutable: age, gender, and family history, for example. Others are modifiable: emotional and attitudinal factors, dietary factors, level of fitness, faith, and social support.

Given their stories, the physician will approach each of these patients differently, even though each of them has the same fundamental needs: education, encouragement, and support.

When is the last time you had to convince a patient to enter treatment? When is the last time you offered to pray for--or with--a patient?

When is the last time you practiced self-care?

"Self-care is a 

divine responsibility."

~Danielle La Porte~

                                                                                                                                                  jan





pretty much foolproof advice

This is just a quick post because theoretically I'm off the grid this week, on retreat at Kripalu Center for Yoga and Health in Stockbridge, Massachusetts (where the use of devices is frowned upon). But, this is important. This is for aspiring writers and storytellers everywhere. 

So, it happened to me again. I pulled a random book off the shelf at the Kripalu bookstore where I was perusing books on meditation and mindfulness, when this book jumped out at me:

The author, Matthew Dicks, is a bestselling novelist, thirty-six time Moth StorySLAM champion, and five-time GrandSLAM champion...proof he knows how to tell a good story. In this book, he shares what he has learned about successful storytelling from his experience with The Moth, nuggets like how your story must begin, how to capture and hold your listener's/reader's attention, how and why to make people cry, and how to balance that with humor. How to amass ideas for stories, what to include, and what to cut.

If I had to recommend one book about storytelling, this would be it. I should know. At last count, I own, and have mostly read, over 150 books covering every aspect of writing from novels to short stories, from memoir to creative non-fiction to poetry. This is the ONE.

"Great stories happen to

those who can tell them."

~Ira Glass~

Happy storytelling!

jan

how to write something true

Windowpane...compliments of Jack Frost in collaboration with Mother Nature

If you plan to write or paint or sing or dance this year...this new year...I hope you have friends who celebrated New Year's Eve by making a list of resolutions with enthusiasm, energy, and optimism, because this is what it takes to make creative dreams like yours come true. I hope your friends pursue their goals with devotion, persistence, and joy so that you can learn from them. 

I have a couple of friends who are like this. Artistic, imaginative, dedicated souls who inspire and encourage me. This year for Christmas, they sent me a poster titled, "How to Write Something True"...step by step instructions to make my writing dreams come true, taking it one word at a time. The same advice applies to you. Simply start by taking one stroke with your brush, by taking the first step of your dance, by singing one note of your melody at a time.

If you have a story to tell, especially if you are a doctor or a nurse, a therapist in any field, a medic, or an orderly, you have something true to say. If you are a patient or caretaker, you know how hard the truth can be. If you resolve to write (or draw or sing or dance) about it this year...this new year...you may be surprised to see what happens next. Affirmation. Release. Healing. So that you can truly live.

"All you have to do is

write one true sentence.

Write the truest sentence that you know."

~Ernest Hemingway~

jan

Christmas eve

Imagine that tonight is Christmas eve. 

Outside, the sun is setting under a sky that could pass for cotton candy.The air is frigid but still. The street is busy with people hurrying home to begin celebrating the holiday. You, yourself, are looking forward to getting home to a crackling fire on the hearth and a traditional Christmas eve meal. The kids are home from college. Their gifts are wrapped and piled under the tree. You breathe a sigh of relief and gratitude.

"I will honor Christmas in my heart

and try to keep it all the year."

~Charles Dickens~

It was a busy day. Among the patients you admitted through the emergency room were a child with asthma complicated by fever and pneumonia, an elderly gentleman who fractured his hip when he slipped on the ice outside his garage, an OD, and an out-of-state trucker with chest pain and an abnormal EKG. Orders have been written, tests scheduled, and rounds finished. Your patients are settled for the night. Your job for the day is done. It’s time to go home.

Except that part of you never goes home.

You can't forget the expression on the child’s face when he learned he would be spending Christmas in the hospital. He’d asked for a blue bicycle and he couldn’t stop crying because he wouldn’t be there to get it…and he wasn’t well enough to ride it, anyway.

You recall discussing her husband’s injury with the elderly man’s wife. She would be alone for Christmas now, and for weeks to follow. She couldn’t imagine how she would manage by herself.

The OD was not accidental. You are reminded of the most recent studies debunking the long-perpetuated myth that suicide rates peak around the holidays. In fact, suicides reach a statistical nadir in December. Still, opioid contamination keeps no schedule and leaves no clues. It will be a long vigil for this victim’s family overnight.

You learn that the trucker’s family is stuck at Chicago’s O’Hare International Airport because of blizzard conditions. They wonder if he will survive this latest heart attack. Will they get there in time?

It’s Christmas eve. You get to go home. Your patients don’t.

"When you're sick, 

it's nice to know there are people

who await your recovery

as they might a holiday."

~Anton Chekhov~

This is a bi-polar time of the year, a time that highlights the irreconcilable discrepancies, emotional extremes, and divergent realities that prevent some people from celebrating the spirit of the holidays. There is poverty in contrast to wealth, sorrow instead of joy, cruelty as opposed to compassion, and of course, illness instead of health.

For those of us in the medical field who are taking our patients’ medical histories, exploring their symptoms, and fielding their pain when the rest of the world is celebrating joy and peace, it is a bittersweet season. Many of our patients will experience pain rather than comfort, grief instead gratitude, anger as opposed to joy, and anguish instead of peace. It won’t be merry or bright at all. They will be stuck with it…and in many ways, so will we.

"Illness is the night-side of life,

A more onerous citizenship.

Everyone who is born holds dual citizenship

in the kingdom of the well

and in the kingdom of the sick."

~Susan Sontag~

If Christmas eve with your family is happy, loving, and peaceful, I wish you a merry one.

If not, I wish you hope. Courage. Friendship. Beauty. Time. Snow if you like it…sunshine if you don’t.

Dickens could have been describing Christmas eve when he wrote in “A Tale of Two Cities":

"It was the best of times,

it was the worst of times...

it was the season of light,

it was the season of darkness,

it was the spring of hope,

it was the winter of despair."

It was Christmas eve.

jan



choosing the path that feeds your soul

Have you ever walked into a bookstore or library and pulled some random book off the shelf just because the title interested you or the cover attracted you? And then, when you got home and started to read it, you discovered to your surprise that it was exactly what you needed at that moment in your life. Something inspiring, or validating, or transformative. You were stunned by the wisdom of the author's words. You fell in love with his prose. You wanted to learn more.

This happened to me recently. I picked up Stephen Cope's book, "The Great Work of Your Life--A Guide for the Journey to Your True Calling." On page 9, he describes what can happen when we hit a crossroads in our lives. Perhaps we lose a loved on, or lose our job, or retire, or divorce. The last child leaves home. Illness strikes. Everything changes. We can't see the way forward because we have no idea where we want to go or what we want to do. Everything that is familiar, and secure, and predictable shifts. Cope writes:

"They came to this crossroads and found themselves rooted there, with one foot firmly planted on each side of the intersection. Alas, they never moved off the dime. They procrastinated. Dithered. Finally, they put up a folding chair smack in the middle of that crossroads and lived there for the rest of their lives. After a while, they forgot entirely that there even was a crossroads...forgot that there was a choice."

That's what happened to me. At some point I found myself contemplating which rocking chair I should set up in the middle of that intersection, unable to decide which road I should take going forward, and whether it was worth the effort.

"When faced with a decision,

choose the path that feeds your soul."

~Dorothy Mendoza Rowe~

Cope's book led me to tackle this stack of books:

...and this stack:

...several of which I read years ago and intend to revisit, as well as several I recently read cover to cover. Twice. In rapid succession.

Why? Because Buddhist psychology and practice fascinate me. Because the authors are brilliant and authentic. The writing is fluent and lyrical. Which makes me a bit jealous. It discourages me from beginning something new at this late hour in my own life. But it also inspires me...

...the same way I am inspired by a friend who was recently invited to display one of her paintings at an art show, for the first time in her life. Her talent astounds me.

...the same way I am carried away by music that has the power to transform my mood and ignite my energy. I can't imagine how anyone can orchestrate such melodies, such beautiful harmonies, such touching lyrics.

I am in awe of what these writers, artists, and musicians can create...when I have trouble putting my thoughts into words, and commas still confuse me. When I can't really draw a decent stick figure. When I can barely carry a tune.

"Creativity is intelligence

having fun."

~Albert Einstein~

Then, I remind myself that, after college, I devoted seven years of my life, 24/7, to the study of medicine...and thirty years to its practice. That was my path in life. Now, I'm writing about it. It turns out that I won't be needing that rocker after all. I've already chosen the road I plan to take.

Or, perhaps, the road has chosen me.

"Wherever you go,

 go with all your heart."

~Confucius~

jan

how will you tell your story?

This week’s post presents a brief excerpt from my novel, The Bandaged Place. It goes without saying that this scene is fictional, but it could just as easily be part of a memoir. It connects the reader with a moment she may have experienced in her own life--when she had to share bad news with friends, when she needed their support, when she knew how hard it would be for them to come to grips with her predicament. The fact that it is fictional does not diminish its impact, suggesting there is more than one way to tell a story.

"One of the most valuable things
we can do to heal one another
is to listen to each other's stories."
~Rebecca Falls~

In this scene, the protagonist, a physician, has just told her two closest friends she has been diagnosed with breast cancer:

          My kitchen is as silent and as still as any place on the face of Earth has ever been—the deepest cave, the holiest shrine, the eye of the storm. I have just finished explaining to Sophia and Barb why I need them here today. It’s one thing to sit at your desk with a patient and break the news to her, “You have breast cancer.” It’s another thing entirely when you are seated at your own kitchen table with your best friends, saying to them, “I have breast cancer.”
          They’re sitting across from me stunned, expressionless, struggling in vain to access whatever words they need to say to me right now. But there are no words for this. Silence reigns.
          I am tracing the pattern of the grain in the wood on the tabletop. Sophia is looking out the window, her chin resting on her hand, gazing as far away as possible. Barb is staring at me, searching for some sign, some indication that would explain how she missed it, as though she should have known something was wrong. And I am having second thoughts as I watch both of them wrestle with this—as I watch everything change for them—knowing what I just unleashed in their lives.
          I break the silence, “Well?”
          Sophia slowly turns her attention back to the present. “Well what?”
          “Well, what’s going through your heads?”
          Barb turns to Sophia for help with this one.
          “Me?” Sophia sits forward and braces herself as if she’s preparing for turbulence, in full upright and locked position. “If it were my decision, Kate, I’d have them both off. And I wouldn’t bother with reconstruction. I mean, what purpose under heaven do they serve anymore?” She waves her hand as if she were scooting the dog away. “That’s what I think.” She sits back as if the voice-of-reason has spoken. Clearly, she doesn’t understand.
          Barb stares at my chest as though the answer is scrawled in capital letters across the front of my sweater. True to form, she sums it all up, “You know what I think? I think you're going to need a puppy. And lots of wine. Red wine. For medicinal purposes."
          Sophia closes her eyes and wags her head. “You’re impossible.”
          I have to giggle. I can’t help it. Barb would come up with something like that. Why is it, I wonder, that the worse you feel, the better bad jokes sound—silly, stupid, crude—as far from reality as you can get?
          “When I was ten,” I tell them, “I went crying to my mother because I had this little sore bump on my rib, right about here.” I point to my heart. “Mimi had just died and I knew that she had breast cancer so I was convinced that I’d caught it from her. At ten! I was so sure of it—so scared—I waited a month before I said anything. And by then it was even bigger so I was certain I was doomed. But Mother just smiled and told me, ‘It’s part of growing up, is all. It’s perfectly natural.’”
          “That was natural,” Barb quips. “This is not.”
          Nor is it fair. Nor is it even conceivable.

*

And so the narrative begins with the physician as the patient.

"Stories are not material to be
analyzed;
they are relationships to be
entered."
~A.W. Frank~

The fact is that scenes like this unfold all the time in real life. If you have shared bad news with your closest friend, you know how hard it was. If someone made you smile on the worst day of your life, you witnessed a miracle of sorts. If you have a friend who was willing to sit quietly and patiently at your side, she helped you heal.

The point is that each of us has a story to tell. If you write, you can translate what you experience, think, and feel into words. But if what happened is too painful or too difficult to chronicle, try wrapping it up in a story or a poem. If you are an artist, you may be able to express yourself better on the canvas. If you compose, in your music. If you act, on stage.

There is more than one way to tell a story, but tell it you must. Which way is right for you?

"Everybody's got a different way

of telling a story, and 

has different stories to tell."

~Keith Richards~

jan