An American Story

Sitting in the waiting room of the Oval Office surrounded by his family, Sam found it both fortuitous and ironic that he had changed his name years ago.  Amongst a flurry of millions of pressing yet inconsequential decisions, Americanizing his Iranian name, Saeed, would later save him some grief during 9/11.  He looked up at the line of government workers and their families wending it's way through the hallways and ending abruptly at the President's office.  One of the security guards had taken pity on Sam.  His eighty year old body hobbled by a bad knee, broken years ago in a tunnel explosion during his years as a foreman in Tehran, bought him a front row seat to the festivities.

Sam loved Iran. His mind could draw a straight line from a childhood spent sleeping on Hamedanian rooftops to his ascension as CFO of a multinational company.  His success and wealth, however, all crumbled that day he was jailed by the henchman of a new Ayatollah who was deeply suspicious of his bosses political leanings.  He won't tell us the details now, but his release, ushered by Shah loyalists at the prison, likely spared his life.

Months later, with visas obtained in Italy,  Sam, his wife, and three children boarded a flight into the unknown.  His wealth, property, and status remained in the country he loved.  There was a pact that if they were detained at the airport, his wife and children would flee to America alone.  A pact that would thankfully be allowed a single day reprieve.  One of Sam's colleagues was detained the next afternoon and never heard from again.

America was not easy.  Brutal in fact.  Sam's position as CFO carried little weight in the US.  He traveled hours on public transportation to jobs he was overqualified for to receive paltry wages.  His wife, a teacher in Iran, became a manicurist.  They survived day to day in a tiny two bedroom apartment.  The Iran hostage crisis insured that there was no shortage of discrimination and racial slurs thrown their way.

But Sam had no time to complain.  He was caught up in the most American of pastimes-providing a life for his three young children.   So he found a way.  When his shoe stores failed he scraped enough money together to buy an apartment building. And they had enough.  Never a lavish life like he had in Iran, but there was always food on the table.

Sam's eldest daughter became a lawyer and eventually worked for the government.  She had given much to her country including years of service in a very dangerous Afghanistan.  It was at her invitation that three generations of his family were gathered to meet our great leader.

As he walked into the oval office, Sam adjusted his eyes to the splash of light and color, flash bulbs and smiles.  A man who was forced to flee a country he loved for dubious political reasons, was now face to face with the leader of his adopted country.  Ironic that he hadn't voted for this president, or agreed on so many issues.  This was allowed here.  Celebrated.

It had never been easy.  Sam's family was nearly deported a few years after emigrating.  He had been held up at gunpoint in his shoe store twice.  He was a victim of far more crimes than any petty moving violation he may have committed while driving absentmindedly.  His family faced discrimination of almost every stripe.

America, however, was also a country of unthinkable kindness and good intention.  Her actions were often flawed, but her principles were unflappable.

At least until recently.

Sam's youngest daughter, my wife and mother of my two children, accompanied her father that day in the oval office.

He waited in line with the rest of his family.  He smiled when the President stood in front of him, and offered his hand.  His English still broken after all these years, his voice was almost a whisper as he spoke his given name in greeting.

I am Saeed.

I Hear the Water, I Hear the Birds

Hello. hello...Pause.  You know my heart jumps every time I see your name come up on the phone!

Every child secretly creates a story about the adult they will eventually become.   A fantasy adorned with all the trappings of honor, success, and beauty.  We imagine a world in which we will make a difference; touch those we come in contact with.  Especially if you aspire toward the medical profession.  Our particular daydream involves rushing into a room with stethoscope bouncing back and forth around neck.  With expertise we bark a series of orders, maybe grab defibrillator paddles.  The patient sits up and blinks.  He immediately knows his life has been saved.  Family members bow.  The nurses swoon at our physical prowess and the medical students at our intellectual.

And then reality hits.  Medical school and residency teach that heroic moments are few and far between.  We learn that medicine is never a sprint, but more accurately a laborious iron man.  Tenacity of spirit, a never ending curiosity, and a deep well of humanity become the characteristics we most strive towards.  Our story has changed.  Our identities have pivoted to a more realistic and passionate ideal.  The rewards become long lasting.  Durable.

The practicing physician's story is idealized into that of Kwai Chang Caine from the TV series Kung Fu.  Humble and quiet, we wander the earth alone.  We come upon misery and despair.  We bend with the wind but don't break.  Our powers are administered gently and patiently to affect injustice when possible, and to cushion the blow when not.

This is a quiet, romanticized story.  We cling to it dearly during the daily blizzard of current medical existence.  It creates warmth and shields against the daily fear, anxiety, and disquietude that haunts this profession.

It's easy to forget that those we administer to also have deeply ingrained narratives.  And when those narratives involve illness, disaster, and death, the physicians role as protagonist is in doubt.  While I have forgotten thousands of patients who have died, their family members remember me quite clearly.  I am the one who told them their loved one was dying.  Or gave a horrible prognosis.  Or it was my phone number that came up that day on their mobile phones.  The day that disrupted their lives.

It was me. In so many stories, I was the last vision before life spiraled.  My words.  The way I stammered or the fidgeting that they will remember as the harbinger of catastrophe.

I can't help but think that this story is wholly suffocating.

I dreamt of being a hero.

Then I dreamt of being the gentle breeze, warm and calm.

Never, never did I dream of being someone's worst nightmare.

Master Po: [after easily defeating the boy in combat] Ha, ha, never assume because a man has no eyes he cannot see. Close your eyes. What do you hear? 

Young Caine: I hear the water, I hear the birds. 

Master Po: Do you hear your own heartbeat? 

Young Caine: No. 

Master Po: Do you hear the grasshopper that is at your feet? 

Young Caine: [looking down and seeing the insect] Old man, how is it that you hear these things? 

Master Po: Young man, how is it that you do not?

Palliative Care Is...

Palliative care is...

I wait intently as the board members rearrange themselves in their seats and look up expectantly.  Silence.  I wasn't going to let it be that easy.  I repeat myself and pause again.  This time a few tentative answers flutter up to the podium.

hospice...comfort care...end of life...giving up?

Now this is something I can work with.  I clear my throat and smile broadly.

Palliative care is a philosophy.

I can't help but launch into a series of idioms.  I talk of the difference between the forest and the trees. I invoke Osler's famous quote about how the great (palliative) physician treats the patient and not the disease. We talk of the sanctity of quality versus the expediency of quantity. I can see heads shaking in agreement now.  The ideas are starting to sink in.  I mention patient-centeredness and I can feel the the room stir.  I talk of dignity.  The goal is to face illness with the same dignity that we attempt to face health.  The participants inhale and exhale with each word.

Palliative care is a skill set.

Palliative care is a consultative service just as a cardiology or nephrology.  Board certified physicians in hospice and palliative care treat pain, nausea, anxiety, as well as a host of other symptoms.  We also are skilled in advance disease planning.  Counseling on end of life, and not so end of life care.  Helping guide the decisions about code status and hospitalization, and timing and duration of care.

Palliative care is a team sport.

Nurses, social workers, chaplains, therapists, volunteers, and nursing assistants.  Relieving pain and suffering is complex and multifaceted.  It is not only a physician's domain.  Each skills set brings it's own version of comfort to the suffering.  But mistake me not, we all speak the same language.  It is neither medicine nor religion.  It's compassion.

Palliative care is not hospice.

In fact hospice is a small part of palliative care.  If palliative care were a bus, hospice would be a few rows of seats in the front (or back).  It is concomitant care  of chronically ill patients coordinated with other specialties.  One can continue any treatment they wish.  Chemotherapy, surgery, hospitalization. And it is not a substitute for hospice.  Hospice is a medicare benefit appropriate for up to the last six months of life for those who wish to discontinue curative treatments.  It brings with it a host of services not otherwise covered by general palliative care.  

Palliative care is important.

It is something you, your family, and your institution need to know about.

Us and Them

I think about her from time to time.  More often than I should.  Being mere acquaintances, there is a certain frequency that goes above and beyond coincidence.  I contemplate what it must have been like working as a second year resident in the ICU (I was an intern at the time). Getting a severe headache and wandering down to the emergency room in a daze.  Strangely similar to what happened to my father.  But she didn't die.

Maybe worse.  She was diagnosed with Glioblastoma Multiforme, a uniformly fatal brain cancer.   She suffered through a stay in the same ICU she was scheduled to cover for the month.  She tolerated surgery and chemotherapy.

She married her boyfriend during a prolonged stay in rehab.  Her head was partially shaved in the wedding pictures.  And one day, she showed up to round with our team on my second year rheumatology elective.  She stayed with us the whole month.  Some days she worked the entire shift, others she became fatigued and left at noon.

We laughed, we learned.  Mostly we pretended she was no different than any other resident.

I assume she died long ago.  Sadly I can remember her face, but no longer her name.  The  years have erased much.  As I said, we were never particularly close.

In retrospect, we were fooling ourselves pretending she was like any other resident.  That day in the emergency room she ceased being one of us, and became one of them.  The sick people.  The people we have dedicated our lives to treat and care for.   The people we keep at arms length.

Pain and suffering are tolerable as long as there is separation.  Us and them.

It works for the most part.  But I can't help daydreaming that maybe she was one of those few percent who survived.  That she has a family and a busy rheumatology practice in some spectacularly boring suburb somewhere.

That she came back to us.

Or that we learned how to be better at being with them.

I really wish I could remember her name.

I think.

Bear Claws and Veterans Who Never Die

Every morning we awaited ravenously for the bear claws.  The director of The VA would saunter by the residents room and refresh the cardboard box with various pastries, Danishes, and bear claws.  Like zombies, our sleep deprived bodies would communally aggregate in the corner and devour our prey.  Stacks and stacks of sugary pastries.

The VA was located conveniently in the middle of a food desert.  The neighborhood was so crime ridden that no delivery person would agree to drive up.  There was no cafeteria.  So we ate bear claws.  Sometimes, during a thirty six hour shift, for breakfast, lunch, and dinner.  Or a late night snack.  The only abundance greater than sugar, of course, was fear

As second year residents, we ran the show.  Supervising a few interns and medical students, we covered the entire hospital.  Hundreds of sick veterans with every imaginable disease.  More often five or six of them at once.  We had no backup.  No support.  The patients got sick and coded.  They suffered almost every complication.  But they never died.  Veterans never died.  They just got more sick.

It was one month out of a three year residency.  The month that made me into a doctor. Upon it's completion, I had learned to stick a needle into most any human crevice.  I pounded on chest after chest during endless nights of CPR.  I brought blood pressures up and took them down.  I admitted twenty new patients over night, covered the ICU, and still somehow had time to show up the next morning and get in line for the only breakfast that was going to present itself to me.

I still wake up in a cold sweat reliving those days.  It's my most dreaded stress dream next to being late for college finals.  A months experiences compressed and splayed out over a lifetime.

I will never be the same.

Since that rotation, there is nothing medicine has been able to hurl in my direction that I can't handle.

And the sight of bear claws makes me ill.        

Thrive

It was only later that I discovered the underlying reasons for the move.  My parents purchased a home in neighboring Wilmette.  The contract was signed and a date was set.  Being in second grade, I doubt I worried about the details.  Maybe I was concerned about enrolling in a new school, I don't remember.  It was nothing in comparison to the tumult I would feel when we relocated after the wedding, before high school.

When my dad died, I assume the contract was nullified.  The overwhelming upheaval to our lives was so great, that a seven year old boy couldn't possibly comprehend the complexity of adult decision making.  We were going to move and then we weren't.  My dad was with us one day, and then he wasn't.

And my life was afloat in uncertainty.  Stalwart in the idea of becoming a physician like my father, I struggled with a learning disability profound enough to keep me well below the level of my peers.  I sat in homeroom coloring while my classmates read from textbooks. I had an army of school provided tutors as well as a private learning specialist.  The picture would have been fairly bleak if I had been old enough to recognize.

But children can be unfalteringly ignorant toward melancholy.  Their unfettered engines continue to run.  They continue to run free.

My two memories left from that year color almost all that I am. In the living room surrounded by family, as my mother whispered in my ear that dad was gone.  And months later, the day my teacher placed a textbook in front of my face and I read.  Surprised, she place another.  A slightly more complex.  And I read.  Then another.  And another.  The children looked up in awe as a pile of textbooks formed on the side of my desk.

My reading and writing improved so much, it was decided that I indeed could matriculate to third grade. Which was incidentally the reason my parents had planned to move in the first place.  They were going to hold me back, and felt it would be less devastating if I transferred to a school where none of the kids knew me.

Years later, my mom would remarry and move us into the same district that I narrowly missed in grade school.

And I would thrive.

Identification and Intimacy

To say that there is no fear in the examining room is an inaccuracy.  I'm not only talking patients here.  Physicians may harbor just as much worry and discontent .  There are the old standbys of course.  The swat team of malpractice attorneys lounging in the waiting room ready to pounce.  Or the old demon of misdiagnosis and the consequences that may follow.

Few of us talk of that sinking feeling that comes with the realization that in the course of doing our jobs, we invite physical danger.  During medical school, I remember a psychiatric patient barricaded one of my peers in an interview room.  The standoff lasted forty five minutes until she was able to escape unscathed.  Physically at least.

I can no longer count the various times I have treated criminals, psychotics, or just plain agitated dementia patients who were willing to take a swing at whomever was in reach.  For the most part, these interactions have melted away quietly leaving me with little lasting effects.

My escape from the traditional examining room has also brought a new set of challenges.  Knowing a patient had a loaded gun a few feet away was somewhat jarring.  Or traveling to a not so safe neighborhood during erratic hours.  One becomes aware of ones surroundings more quickly. There are countless dangers that won't bow to our flowing doctorly lab coats.    

But by far, our biggest unspoken and often unrealized fear, is that of identification.  How does one break the horrifying news to a dying young person and not look in the mirror and see a similar countenance?  How do we not envision our spouses, our parents, and our children in every hapless medical misadventure that we are a party to?

The answer is that we don't,  We use our walls to create a sense of otherness.  We shield ourselves to such an extent that it my twenty year career, I have rarely had these conversations with colleagues.

And as I get older, I wonder if we should.  There is a certain intimacy in identification which has been lost on those that hide behind the stethoscope.

We give ourselves a pass.