this is my story, and I'm sticking to it

 

~taken on my walk today~

This is my story, and I'm sticking to it.

I am now almost six weeks post-op right total knee replacement. As a physician, I thought I knew what to expect going into this, but apparently I didn't. I expected pain but I didn't expect it to be excruciating. I didn't anticipate the exhaustion I felt. No one warned me about the "brain fog" I experienced that prevented me from reading, or writing, or meditating during my down-time.

I was curious to know what recovery was like for others so I joined an on-line support and recovery group:

https://www.facebook.com/groups/700714269949595/

There I was met with an out pouring of stories! 

The problem was that many of the stories people shared were worrisome. Some of them were still in severe pain months after surgery. They weren't able to sleep. They never regained their range of motion or strength. Some of them developed secondary infections. Many of them regretted their decision...not what I was hoping to hear.

"Write hard and clear

about what hurts."

~Ernest Hemingway~

Some of them were, however, encouraging. Some people described how they sailed through surgery and recovery. They were sleeping well. They were driving after a few weeks and back to work in three months. They were riding their bikes or had returned to the gym...exactly what I needed to hear. Except that I wasn't up to any of that early on. So, of course, I started to doubt myself. I wondered if I should be trying harder. Pushing through. I wondered if I'd made the wrong decision, myself.

What should have been encouraging made me feel just a tiny bit jealous. When all I could do was complain, it felt like they were bragging about their success. Some of them probably were, but a few of them were kind enough to offer a little disclaimer: "I may sound like I'm bragging, but I'm not. This is hard. I just want you to know that things do get better. You can do this!"

And then, the day arrived when I turned the proverbial corner...from pain, frustration, and discouragement to healing and hope. Voila!

"Proceed as if success

is inevitable."

~Author Unknown~

So, now I have virtually no pain. Last week I was cleared to start driving. This week, I was discharged from physical therapy to a home exercise program. I'm walking an hour almost every day. Four weeks ago I would have told you this would never be possible.

The point is that, when we share our stories, they may be received in ways we don't intend. Something that strikes us as funny may touch a tender spot that brings a reader to tears. Our success may make someone else feel like a failure. When we write to comfort or encourage the reader, we may accentuate his sense of loss, frustration, or shame. 

This is where a disclaimer may serve us well as writers. Instead of presenting ourselves as the undisputed expert on the topic, the final voice of authority, it may be more inviting to begin with, "This is how it was for me. Your experience may be different." Or, "This is how I see it. You may not agree." Or, "This is what I believe in. You may not." This approach embraces universal truth, which is what we should strive for. It allows us to share our story while acknowledging the legitimacy of our readers' version of their own experience, or observation, or perspective.

"The wound is where

the light enters you."

~Rumi~

We are all invited to share our stories, happy or sad. We are encouraged to tell our tales of victory and defeat. We can offer words of encouragement or despair. Everyone's story is different...and everyone hears it differently. Simply remember this:

"One day you will tell the story

of how you overcame what you went through

and it will be someone else's survival guide."

~Brene Brown~

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the will to live--or not

 

Two friends of mine have cancer. The prognosis for both of them is grim because their tumors are so difficult to treat.

One is a woman who has been in treatment for six or seven years now, proceeding from one experimental protocol to another in a futile effort to halt the spread of her tumor. After every course of chemotherapy, she suffers severe side effects, often requiring hospitalization to manage pain and dehydration. Most of us would have given up by now, but her will to live is fierce. Unyielding. Defiant. It is fueled by two things: love for her family, and hope (aka faith). Well, maybe three things. There's always heartache. The pain a mother suffers when her children's hearts break for her. Knowing she won't be there for them when they long for her comfort, strength, support, and wisdom. For her love. She will do anything to beat this disease.

"Love is the ultimate expression 

of the will to live."

~Tom Wolfe~

My other friend was healthy until, all of a sudden, he wasn't. The risk factors for his cancer included smoking and drinking, but he had never smoked, and he didn't drink...so, go figure. Of course he would have preferred life to continue as it always had. Not like this. His will to go on was dampened not only by the side effects of treatment, but by his inability to care for his family. The fact that he needed help for the first time ever. That he felt like a useless burden. It caused him to lose hope. He wanted to die.

"Hope is the last thing

ever lost."

~Italian Proverb~

It is hard to know how to support a person who clings desperately to hope when, in truth, there really is none...just as it is hard to encourage the patient who has already given up. Platitudes and cliches offer no real wisdom or comfort. No one wants to hear, "God never gives us more than we can handle," or "God must have something better in store for you," when all they can see is suffering and death.

What has been shown to be helpful, though, is the simple act of storytelling. Sharing favorite memories. Reminiscing about the times you enjoyed together. Exploring what kept you connected in good times, and what sustains your friendship now. It has the power to generate laughter, as well as to release tears. If not to heal, at least to sustain.

Storytelling helps because it celebrates your presence. Your attention. Your engagement. You have not abandoned your friend, or if you're a healthcare provider, your patient, at the most difficult point in his life.

Even your quiet presence can be comforting. It suggests embracing with ease what might otherwise feel like an awkward silence. Processing grief with equanimity. Reflecting upon what (you hope) comes next. All the thoughts that may never find their way into words.

"Dancing, singing, storytelling,

and silence

are the four healing salves."

~Gabrielle Roth~

The person who has a strong will to live will take comfort, find encouragement, and embrace hope because of your words. In your peaceful presence. The one who has given up may be inspired to hang on a little longer. I like to remind my friend that they may discover the cure for his cancer tomorrow.

"We are all just walking 

each other home."

~Ram Dass~

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this might hurt a bit

True Story:

I am currently in the process of welcoming a brand new right knee into my life. She was a bit reluctant at first, but we're getting along better now. She's complaining less. I'm sleeping better. Together, we're making plans for the future. 

I've undergone major surgery before, so I knew what to expect going into this...or so I thought. I was prepared to be exposed (literally) as an ordinary human being. I knew there would be pain, swelling, stiffness, and frustration. Even regrets. I told her we had to go to physical therapy even though all that bending and stretching would hurt. I promised that when she is ready, I'll take her for long walks on the beach and in the woods. We'll sit cross-legged together in meditation.  

She asked me to be patient with her. She reminded me that healing takes time. You can't rush it, but you can hamper it if you don't do your exercises...or if you're impatient and push yourself too hard, too soon. What you thought would take five days may take five weeks, and what you thought would take five weeks can take five months. Ho-hum.

"Your body's ability to heal

is greater than anyone has permitted you

to believe."

~various attributions~

So we agreed on a few books we would read while we wait. What shows we might enjoy on TV. What writing projects we could work on. She surrendered to the ice packs while I turned the heat up a bit.

Total knee replacement is a common procedure these days, but that doesn't make it a quick and easy fix. Recovery has its ups and downs. Its frustrations and consolations. Its victories and defeats. 

If you are facing major surgery, here is my advice to you:

• Learn all you can about what you can expect from it. Believe about half of what you are told.
• Do as much as possible to prepare yourself physically and emotionally for it ahead of time. I forced myself to exercise for months before my surgery to strengthen my legs for what was to come, and they love me for it now.
• Enroll a couple of sympathetic advocates to encourage and support you. That way, when they ask you how you're doing you can lie shamelessly, "I'm doing fine...", and that will make them feel better, too.
• Don't wait until your pain is unbearable before you take something for it. Take it, according to directions, before you really need it. It's harder to get ahead of pain than it is to prevent it.
• Patience and self-care promote healing.

"Self-care is a divine responsibility."

~Danielle LaPorte~

For anyone out there who is dealing with a joint replacement, I would like to offer a huge thumb's up, a full-out drum roll, a trumpet fanfare, and resounding applause! You have earned it!

"Take care of your body.

It's the only place you have to live."

~Jim Rohn~

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put your laptop to sleep for this

Tomorrow I go into the hospital to have some repair work done. The initial injury occurred over a year ago in an attack by a rogue chairlift when I was looking forward to a glorious day of skiing. The surgery doesn't worry me. The problem is that I won't be able to drive for a while, so I'll have to ask other people to help me with the simplest chores. And, instead of taking care of patients, I'll be one.

Some time ago I listened to a program on NPR about the factors that influence the perception of, response to, and recovery from a painful injury or condition. It focused on the differences in perception between persons who feel victimized by an injury, for example, a car crash, and soldiers who are hailed as heroes when they sustain injuries on the battlefield. 

In a futile attempt to revisit the program for the purposes of this blog, I reviewed a mountain of research and literature on the topic. It astounds me that so much academic effort is devoted to a topic that seems intuitive to me. We witness it all the time. Athletes who play through or continue to compete despite injuries that would sideline most of us. The fact that any woman would put herself through childbirth again, after the first ordeal. As opposed to the person who seizes on his injury or pain to excuse himself from work, or to gain sympathy.

"Pain is inevitable;

suffering is not."

~Haruki Murakami~

Many factors affect the way a patient responds to a painful injury or illness. In addition to gender and age, there is a role for:

• social and cultural norms and expectations
• past experience and conditioning
• the sense of victimization vs heroism
• the patient's motivational state
• his emotional state
• his religious inclination
• social support

"Often it isn't the initiating trauma

that creates seemingly insurmountable pain,
but the lack of support after."
~S. Kelley Harrell~

The easy part for the health care provider/therapist is to diagnose and treat the injury. The hard part is to understand the patient's attitude toward his pain, and how it affects his recovery:

• Is he angry, fearful, ashamed, or depressed?
• Who does he feel is to blame for his injury?
• Will he be able to work? Does he want to work?
• Where can he turn for support? Will he accept it?
• How will she take care of her children? Who can she turn to for help?
• Is he using his injury as an excuse or escape, or as a way to gain sympathy?
• Are his family and friends supportive or dismissive?

These dynamics suggest themselves when the patient fails to respond to treatment as expected, or is non-compliant with the treatment plan.

If you suspect this is happening, it may be time to put your laptop to sleep, look your patient in the eye, and sort through some of the other issues that complicate recovery from an injury, issues you won't find bulleted in the EMR. If you're the health care provider, you must explore the patient's whole story.

If, on the other hand, you're the patient, you must be honest and compassionate with yourself.

"Self-care

is a divine responsibility."

~Danielle LaPorte~

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how to find inner peace

The Covid-19 pandemic raised questions we never thought we'd have to ask ourselves. How can we stay safe and guarantee our children will be safe? Who will take care of us if we do get sick? How much worse can things get??

This is my question today: If you are hospitalized for any reason, what would you like the stranger who is taking care of you to know about you? What would you tell them if you had the chance?

Your age? Your occupation? How big your house is? What kind of car you drive? How many children and/or grandchildren you have? Which God you pray to?

"Can you remember who you were

before the world told you

who you should be?"

~Charles Bukowski~

Or, would you tell them about the time you slept out under the stars and didn't worry one bit about the little critters stirring in the leaves nearby? Would you tell them about the time the storm hit, and you huddled in front of the fireplace all night long with your dog because it was the only warmth you could find? Would you recite the poem you wrote the day you were walking in the woods, and the first snowflake of the season fell right in front of your eyes?

"The tragedy of life is not death...

but what we let die inside of us while we live."

~Norman Cousins~

Would you like them to know how you squandered your life...or who you really are? What you own...or what you've provided? What discouraged you...or what inspired you?

It's worth thinking about. Why not pick up a pen, or open a new document, or get out your journal, and tell us who you are? Just in case...

Tell us how you want us to remember you. Then, make it happen.

"Inner peace doesn't come from

getting what we want,

but from remembering who we are."

~Marianne Williamson~

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make me care

The art of storytelling is as old as the spoken word, and it's just as powerful. It entertains, informs, and connects mankind across culture, race, and creed. It has the power to heal, and in medicine, it can be a life-saving skill.

Most people enjoy reading or listening to stories at their leisure. The health care provider, on the other hand, listens to stories all day long because it's part of his job. This is how he obtains the "history of the present illness," perhaps better described as the "story of the present illness." It forms the basis of all that follows: performing the physical examination, tracking down the diagnosis, and formulating a treatment plan.

The clinical encounter begins when the health care provider takes the patient's history. He listens for specific details that lead him to the diagnosis. If the problem is pain, the provider wants to know where it's located, and whether it's sharp or dull, steady or throbbing, constant or intermittent. He wants to know how long the patient has had the pain--for a day? For a month? For years? What makes it better? What makes it worse? These details guide him through a maze of possibilities.

"The shortest distance

between a human being and the truth

is a story."

~Anthony de Mello~

The problem is that patients don't know what the provider needs to hear. They don't arrive at the office prepared to rattle off a list of relevant signs and symptoms. It's the provider's job to ask about them, but he only has so much time to get to the bottom of the patient's problem. Nowadays, the written or dictated clinical note has been largely replaced by the electronic medical record (EMR), so rather than listen to the patient's history, the provider navigates his medical record with a series of clicks that pull up an array of bulleted lists, complicated charts, and sketchy details. This is intended to expedite what has been ruthlessly abridged to a ten-minute office visit.

Because time is limited, doctors often redirect the patient who appears to be getting off track or is slow coming up with answers. In fact, one frequently quoted study found that physicians interrupt and redirect the patient when they are as few as 18 seconds into the interview. Frequent redirection leads the patient to believe that what he wants to say isn't important or relevant, so details go missing.

This is a problem. Healing, or failing to heal, occurs in the context of a person's relationships with his family and friends, his surroundings, expectations, and perceptions, as well as his emotional, psychological, and spiritual life. If the patient is denied the opportunity to tell his whole story, part of him may never heal.

"Healing yourself is connected to

healing others."

~Yoko Ono~

Let's say, for example, that the patient presents with abdominal pain. He answers all of his doctor's questions. The pain has been present for four days. He describes it as constant. It started in his upper abdomen, but now it radiates into his back. Eating makes it worse. In fact, the patient says he hasn't been able to keep anything down for the past twenty-four hours. After a focused physical exam and a few tests, the physician correctly diagnoses the problem as acute pancreatitis. But that doesn't explain why the patient develops a headache, has trouble keeping his balance, and becomes confused the day after he is admitted to the hospital.

What the doctor doesn't know is that the patient has been drinking heavily because his wife walked out on him recently. In fact, he blacked out a couple of days ago and woke up on the floor next to his bed. He didn't mention it because he was busy answering the doctor's questions about his abdominal pain. So, the doctor missed the small subdural bleed his patient sustained in the fall until days later when he had his first seizure.

This scenario highlights an important problem. Obtaining an accurate and thorough medical history takes time. Given the imperative to see more patients faster, the provider may have little time to explore the details of the medical history with every patient. Perhaps he's running behind schedule, or an emergency interrupts him. In some cases, the patient can't bear to disclose the sorrow, or fear, or shame that underlies his symptoms, so he doesn't mention it. It takes time to invite, enable, and encourage some patients to share the story that brings them to the office in the first place.

"Storytelling is the essential human activity.

The harder the situation, 

the more essential it is."

~Tim O'Brien~

When the patient is constantly redirected in order to satisfy the provider's agenda, important parts of the story may be overlooked. This reinforces the importance of hearing the patient's full narrative. When we reach into their cholesterol laden hearts to understand why they are poisoning themselves with food, we need to know more than what they are putting into their mouths. When a patient is noncompliant, we need to consider what he is afraid of, or angry about, or grieving over. When we allow the patient to speak, we may discover that the reason for this one's fatigue, or that one's intractable headache is end-stage disappointment, or anger, or shame that has festered for years.

Only then can we help them heal.

"The greatest story commandment is:

Make me care."

~Andrew Stanton~

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the trouble often starts with a small piece of fluff in your ear

In narrative medicine, the patient's story (his medical history) can be received, interpreted, and acted upon differently depending upon who is listening to it. For our purposes, this is likely to be a physician, a nurse, a nurse practitioner or physician's assistant, or a therapist in any field. For that matter, it could be the person who delivers the patient's breakfast tray, or mops the floor, or delivers flowers to the patient's bedside. Each of us brings a unique perspective to the process based on our personal experience, expertise, expectations, and even our fears.

 

"If the person you are talking to

does not appear to be listening, be patient.

It may simply be that he has a small

piece of fluff in his ear."

~AA Milne~

~Winnie-the-Pooh~

 

It's easy to see how exhaustion, tight schedules, and productivity quotients can affect a provider's response to the patient's story. He may feel rushed, impatient, frustrated, or anxious, depending upon how his day is unfolding. Not a healthy emotion among them. None of them helpful to the patient.

It's not as easy, however, to know when the patient's story itself is difficult for him to hear...or embrace...or understand.



"Most people do not listen

with the intent to understand.

Most people listen

with the intent to reply."

~Steven Covey~

 

It will be painful for the obstetrician who has suffered her own miscarriage to celebrate the birth of her patient's healthy infant...or to console the patient who loses her own unborn child.

 

If the provider lost his father to lung cancer, he may harbor frustration or anger with the patient who continues to smoke. It may unmask his grief when his patient fails to respond to treatment.

 

Let's say the physician has been training for her first marathon when one of her patients suffers a cardiac arrest during his daily run. Suddenly she feels guilty because she encouraged him to exercise regularly in the first place. She becomes fearful for her own safety and wellbeing

 

Listening to our patients' stories can be difficult depending upon our own circumstances. We are called to be attentive, empathetic, knowledgeable, and effective when we may feel anxious, or helpless, or sad.

 

The practice of narrative medicine encourages the health care provider to explore the patient's entire story, and to reflect upon his own reaction to it. This process promotes accurate diagnosis, and appropriate and effective treatment. It facilitates healing.

 

It also provides a platform for providers to explore the story of their own experience as healers, and to confront the challenges they encounter. This can include organizational and procedural obstacles, as well as emotional, physical, and psychological stressors. Telling their own stories helps wounded providers heal.

 

"The healing that can grow

out of the simple act of telling our stories

is often quite remarkable."

~Susan Wittig Albert~

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