What is Adulthood?

The tumultuous diversity of America is great gift.  Our dynamism as a country surely depends on the constant exposure to new ideas and ways of thinking.  On the other hand, it comes at a cost, too.  Community cohesion seems to be the cost we are paying for this wonderful engine of our country.

One of the binding forces of community is ritual.  Traditional cultures have rituals for all major life events.  These rituals bind us to one another and help us feel rooted in our people and place in the world.  One such ritual I often feel is missing in our culture is that of passage of into adulthood.

I think many of us reach adulthood at different times in our lives.  Clearly 12 years old is no longer the time for recognizing our transition into adulthood.  Yet, I think clarity would be helpful.  Those of us in Medicine often seem to have a prolonged entrance into adulthood due to the many years of schooling and training.

When did I become an adult?  At 18?  When I graduated college, or medical school, or residency?  Maybe, for us Millennials, the transition to adulthood happens when you have to start paying off your student loans?  I had a long slide into adulthood, slowly gaining more and more responsibility.

A little ritual to mark a moment might have provided some clarity.

Is responsibility what marks our transition to adulthood?  I am not so sure.  I always had a fairly large amount of responsibility, often more than my peers.  Yet, it did not make me feel more “adult.”

Growing up, adults are the ones who have the answers.  They teach us the rules of life.  They provide structure and certainty to young, expanding minds.  I know more thing than I ever have, but often feel like I have fewer and fewer answers to the questions which matter.

I still don’t really feel like an “adult.” I certainly don’t feel like I can offer anyone else any certainty.

Feeling Old

Yet, I do know what it means to feel old now.  Unlike adulthood, I learned what feeling old feels like within a matter of 2 months.  After the first, burning, searing weeks of grief gave way to a smoldering, tired blanket of grief.  Our first daughter dying made me feel old.  All of the sudden, I was world-weary and inexplicably brain-and-soul-tired.

It seemed as though the world had gone gray, and taken me with it.  Everything took more energy than it had before.  Then, the hospital-pharmaceutical complex came and demanded I keep performing my RVU tricks.  Any hope I had had of finding some comfort and solace in work and my supposedly noble profession was dashed.

I have hurt more deeply than I knew possible.  Yet, life keeps going.  Now, I visit my grief at times.  Sure, sometimes I feel guilty I can not feel it for a few days to even a week at a time.  Sometimes, when I feel guilty about having joy and pleasure in life again, I got back to the day we had to say good bye.  I remember holding her as she stopped breathing.  Soon, I am softly crying, and I know I haven’t stopped feeling her loss.

The grief of losing my daughter was by far more painful of the two wounds I sustained at that time.   No one should have to lose a child, but people do.  Sadly, it is more common than many realize.  A path exists, there are books, and people want to be supportive (even if they are often bad at it).   Maybe because of this, I have found the process of coping with her loss and healing from it to be simpler, if not easier, than coping with my disillusionment with Medicine.

You Can’t Turn Back The Clock

The repeated grief of coming face to face with my disillusionment with a calling I had had actually grown to believe in seems to be never ending.   The Hospital-Pharmaceutical Complex seems to take joy in reminding me of its callousness and love of profiteering.  It never fails to slip comfortably under the already low bar where my expectations are.

While I have come more to terms with the reality of modern doctoring, it still makes me sad.  Sure, sometimes I am angry, too.  But really, it is mostly sadness.  I don’t have the energy to be angry at a giant faceless industry.  That sadness seem to be the well which feeds my feeling of elderliness.

Before, I felt like I was participating the arena of Medicine.  I was an eager young pupil, ready for action. Now, I view the going-ons of all the little hospitals as an old man on a bench dispassionately watches a cat stalk a squirrel in a park.  It is a drama, but a small and distant one, separate from the man’s life.

Sure, it will be sad for the squirrel, but the world is simply this way.

Welcome to Adulthood

Maybe, I wonder, this is what adulthood is.  It is not rituals, nor accomplishments, nor financial responsibilities.  It is the world teaching you it is not a place of endless possibilities, at least no longer for you.  Is adulthood the place and time where we realize life can be just as cruel as it is wonderful?

Do we become adults when we transition from an excitement about how the world could be to a acceptance of how it is?  No longer the young revolutionaries, we become harnessed bureaucrats and accept our fate?

Maybe then, I was lucky to make it to 32 before I became an adult.  I had a long and wonderful childhood, full of joy and discovery.

On my better days, I hope to return there.

Maybe that hope means my transition to adulthood isn’t so foregone, after all…

 

Wherever I Go, I am a Stranger

Spring is the best time on High Plains, especially on the Northern High Plains. The snow has melted. If the springs rains came, then the grass has greened and the winter wheat is growing in the fields. Verdancy is everywhere.

The birds have returned and their sounds can be deafening. The mourning doves and prairie meadowlarks fill the evening with their calls.

The wind brings the scent of sweet clover and moisture. Later, in July, it will feel like a dusty blast furnace. But now everything is pleasantly fresh and new. It is a good time to get out of the City. The sense of possibility and abundance surround you as you walk down dirt streets.

Towns on the plains are of two camps, clod hopper towns or shit kicker towns. This roughly divides them between towns that rely on farming and those that rely on ranching, respectively.

Farming requires more machinery, more labor, and is more lucrative. As such, these towns have a more robust tax base and generally more funds for services. They tend to have greener lawns and more orderly, well-kept homes.

I am on shift in one such town today. School has ended for the year, children run feral throughout the town, down lanes of arts and crafts homes and mid-century ranches. It reminds me of my childhood.

Upon going out into the world, I found out that even in the 1980’s and 1990’s, I was living a childhood out of a different time. Now, these children are having an experience downright foreign in comparison to their urban and suburban counterparts.

In this little pocket of America, the end of school year does not simply mean a transition from one overly-scheduled, hectic routine to a different overly-scheduled, hectic routine.

It means the freedom to roam, make mistakes, get hurt, and learn and grow. Freedoms now so rarely afforded children in our society.

I sit in the well-manicured park next to the baseball diamond and let myself dream of a simple life in a little world like this. Where my daughter could roam the streets in relative safety.

Forever the Rolling Stone

Freedom so often means that one isn’t needed anywhere. Here you are an individual, you have a background of your own, you would be missed. But off there in the cities there are thousands of rolling stones like me. We are all alike; we have no ties, we know nobody, we own nothing. When one of us dies, they scarcely know where to bury him… We have no house, no place, no people of our own. We live in the streets, in the parks, in the theatres. We sit in restaurants and concert halls and look about at the hundreds of our own kind and shudder.

Willa Cather, O Pioneers.

It is a silly little fantasy. I am a stranger here. I always will be. Even if we moved in and I set up shop as the town doctor, I would always be an outsider. I would be a little suspect, I wouldn’t really “understand” the town. That is the way it is.

As long as I am temporary, the staff and patients treat me well. They treat me like a guest. They are very kind and obliging. On the other hand, I know cultures which place the most importance on hospitality towards guests are also often the most closed.

As long you are a guest, you have no rights in community decisions. You are otherized and compartmentalized into a nonthreatening entity, ever so politely.

So, I roam, continually a guest, an outsider, an observer. Nonetheless, the dream of simple little corner of Americana is a seductive one…

To Dream a Little Dream

When I discuss these little flights of fantasy with my wife, she sighs and rolls her eyes. She knows why a simple, pleasant, little life for us is only a dream. We are not simple, pleasant, little people – and I am likely the worse of the two.

I don’t know if we dream of bigger things, but we do not fit into molds well. We are not terribly pliable people. We have not melded back into the city well, either. The self-indulgence, easy conveniences, greed, commercialized spirituality, and glorification of self have rubbed us raw.

I often wish I could be satisfied with a simpler version of what life was about. I wish I could still believe working in healthcare is about helping people.

But some things cannot be unseen, some hurts cannot be unfelt.

Simplicity is Complicated, Too

The funny thing is, my life actually is much simpler now that I travel for work. I roll in, do my work, and I roll out. Back at home, I live a life with plenty of unstructured time spent with my wife and daughter.

Work is far less draining. I don’t go to meetings to be harangued about productivity, my life is not held hostage to a call schedule. Yet, I am perpetually a stranger at work, and in the City.

It turns out, after a certain age, most of the people in our lives we meet through work. And most people don’t have 10-20 days a month free to spend as they like – they are at work.

It is an odd paradox, my life is honestly much simpler than it has been in years. Yet, that simplicity has not necessarily made it richer.

Without the demands of Medicine following me day and night, I have had to let myself be a human again. To let myself do nothing, without guilt, which has been the hardest part, by far.

After 9 years of being fashioned into a bow and strung tight, always ready to react to some new crisis, it is hard to unstring oneself. Sometimes, I force myself to remember I was a whole person before Medicine, and will continue to be so if I were to leave it.

The Stranger, only Human

So, this is the trade-off. I am perpetually the stranger, but much more human. I am not defined my role and relationship to my career and coworkers. Now, two thirds of the time I am simply me, not Doctor HighPlains, but just a guy with a family.

I also remember grief and disillusionment have led me here. They have forever changed my relationship to the world. Initially, it is all destruction and chaos. That is the painful part.

The world expected the pain after we lost our first daughter, it expected me to hurt. But then, as the pain transmuted from a gaping, burning wound to an ember of love and sadness, the next part came.

The awkwardness of building of a new self and a new world. This struggle is harder for people to see and relate to. It is a constant tension. I make progress and lose it all within seconds.

And really, even though we are 18 months removed from the loss of our daughter, only now has the pall of crisis started to lift from our lives. We lost our daughter, quickly moved states, set up new lives in new jobs. Then, we had survive the stress and anticipation of another pregnancy.

We had the normal stress of a newborn baby, mixed with the guilt of feeling the pain of losing our first fade. Only now, has our breathing seemed to slow to a normal pace.

Without crisis and loss and disillusionment, who am I? The Stranger, forever it seems now, the Stranger. I have become, it seems sometimes, a stranger to everyone including myself.

So, I accept this task. The awkward, slow task of getting to know this new me in this new world. I am bad at it, but I am doing it.

A Note of Gratitude to Medicine

The end of the year is always a time for reflection.  The darkness leads to more time indoors, more time with our thoughts, and often with our families.  Reflecting on this difficult year is a strange exercise for me.

A Tumultuous Year

My wife and I have passed the one year anniversary of my daughters birth and death.  Moreover, I am now more than 6 months into my new gig as a traveling critical access doctor.  Life has started to settle into a bit of rhythm. 

After all of the grief and upheaval of the last year, simply living a relatively normal life can be rather unsettling.  I seem to even seek out problems or reasons for dissatisfaction.  I have a bit of a restless soul – a blessing and a curse.  

For one, the holidays seem to be a negative trigger for me this year. 

I always struggle from the time the clocks change to the first week or two of January.  The loss of light affects my mood for the worse.  Prior to last year, I had a great ambivalence about the holidays – neither a grinch nor a lover of the season. 

The Shadow of a Loss

That being said, last year’s holiday season was not a good one for our family.  The holidays came very quickly on the heels of our daughter’s passing and I was on call for a good bit of both Thanksgiving and Christmastime.  

With those memories so fresh, this year’s holidays are hardly buoyant.  Sure, the pain is not as fresh and does not burn quite as bad, but its shadow stills falls on the season.  

Living through this holiday season is like walking through the burnt-out shell of an ash-covered family home.  The shock and wailing pain of watching the flames tear everything apart has past.  Nonetheless, an eery sadness lingers over everything. 

To keep myself from falling into a hole of self-pity, I have taken some advice to actively practice some gratitude.  God knows I have plenty reasons not to feel gratitude, but I also have plenty reasons to do so.

Giving Gratitude a Chance

Even last year, my wife and I took time to be actively grateful for the arrival of our daughter, even if her presence with us was far too short.  She taught us a great deal and the heart cannot be overfull of love.  

Finding gratitude about the current state of medicine and my role in it takes a little more effort. I have written a lot about my experience in medicine and life over the last few months (and it hasn’t all been rosy).

Yet, I also remember the ones and things we love are often what can hurt us the most.  My relationship with medicine is much more complicated than it once was.  

I struggle to accept the imperfections of a system charged with healing yet is highly profit driven and largely inhumane. 

This system charged me a steep entrance fee.  The cost comes in actual dollars but also in time and stress and tears.  In the end, I felt expendable.

Yet, I also have to remember the care our daughter received in that same system.  I cannot forget our neonatologist sitting in front of our house with us as we held our daughter without tubes or machines for the first and final time. 

Humanity does still course through the veins of our healthcare system, even if the system neglects it at every opportunity. 

Nonetheless, My Privilege is Great

Doctors are a pretty privileged lot, all things considered.   I don’t mean to minimize my own or other’s distress at the current state of affairs.  On the other hand, I see how my situation may have played out very differently for someone else.

Few other careers exist where you can quit your job, move to another state, and have to turn down work immediately.   That is how it worked out for me. 

I simply showed up and had my choice of work location and practice type within my speciality.  Not only that, but I have been able to improve my worklife balance with an acceptable sacrifice of income.  

Physicians skills are in such need that not only was I able to find a different job, but a completely different way of working.  Hard to complain. 

Medicine giveth, and medicine taketh away.

Work isn’t Everything

Even more importantly, medicine had given me wisdom.  Caring for people who were very ill or had suffered great loss or trauma gave me access to life’s most difficult moments.  Few other professions allow for the gaining of such wisdom without personally suffering those blows.

Learning how to help guide people through their struggles led me to read books and literature I never would have read otherwise.  This knowledge was invaluable when our daughter was born.  I didn’t have a how-to guide, but at least I knew the big ideas.

Most importantly,  I had learned the value of connection.  When our daughter was born, our gut reaction was to circle the wagons, raise the drawbridge.  My patients had taught me this was not the right move. 

Love and loss must be shared, inextricably linked as they are.  We called friends and family and offered for them to come to meet our daughter.  To be present with us in a difficult time. 

Without exception, the responses we received were full of gratitude.

“We are honored to come,” was the common answer.  

In our moments of grief, this might surprise us, but it shouldn’t.   Wouldn’t all of us respond the same way if someone we loved extended us the same offer?

Moreover, the decision has paid great dividends.  To those who met her, the people we love, our daughter is not simply the nameless baby we lost.  She was a person, has a name.  We can talk about the shape of her nose, or her special little movements with so many people. 

Having her in more people’s memories does not just preserve her memory, but means she was even more alive when she was here.  Hell, we even have a social security card for her.

It is the caring for patients that taught me this knowledge before my family needed it.  In the end, I am still thankful for medicine.

“When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.”

― Kahlil Gibran

Mindfulness on the Fly

The Walk

I can feel the increase in pressure as the shoulder straps dig into my shoulders with every heaving step up onto another piece of talus.  I just crossed the eleven-thousand foot mark.  Five miles and fifteen hundred vertical feet, not all that bad, considering.    

The dry winter has opened up the high country early, so I am heading to a small glacial tarn that is about 500 vertical feet and a half-mile off trail.  I have only put my rod together once in the last 6 months.

Struggling out of an alpine willow thicket, I drop my pack in view of the lake.  More like a pond really – but deep as a lake. 

The Water

This high water is not on the official stocking list for the state’s department of natural resources.  Yet, the trout seem to overwinter well in its deep cold water.  Moreover, it has no passable outflow to lower waters so the trout are safe from whirling disease and other such pests. 

They sit under the ice all winter, waiting for their brief 4 months of feeding.  I have timed it well – iceout was just last week it appears.  One full shoreline is still snowbound. 

I pull out some medjool dates and a water bottle, slowly chewing each date and rinsing it down with cold spring water from the lower slopes.  I stand up and start getting ready. 

A wind comes down the glacial valley from thirteen thousand feet and chills me.  Despite the physical discomfort, it feels good, or at least right.

The Ritual

I pull out my rod, closely inspecting and aligning the four pieces as I assemble it.  Shaking the handle, I watch the energy dissipate down the rod like a fencer preparing for a bout. 

I pull out my reel, attach it to the rod handle, and begin to string the line along the length of the rod.  With each narrowing loop the line passes through, I can feel the troubles left behind.  

The student debt, the house payment for the house that hasn’t sold yet, the crisis of faith in my supposed calling, I feel them each dropping off.  The only stress left by the time I have attached the leader is the loss of my daughter. 

Yet, hers is a welcomed sadness.  I didn’t come to forget her loss, but to be quiet with it – alone. 

Opening my flybox, I pull out a dry-fly – the elk hair caddis.  I know I’ll probably have better success with a olive bed-head wooly bugger – I almost always do.  Nonetheless, part of the ritual is the dry-fly.  

The First Cast

I hop out onto a large rock at the edge of the shallows.  Gently moving my right arm back and forth, I let out line.  After a half-dozen or so passes, I gently place the line down on the water’s surface where a trout might be cruising.

Island Lake, Wind River Range, WY.  Source: USFS

The tuft of elk-hair floats serenely on the water.  I give all my focus to watching the water and the fly.  It gently sways on the water as the wind moves over the lake.  I slowly gather line in my left hand. 

Feeling myself tense, I am fully in the moment with the water, the invisible fish, the mountain, and the sky.  I am nowhere else, neither in time or place.  I am fully present on the lake, on the mountain, watching this stupid fly. 

Now We are Fly Fishing

Nothing happens.  I try several more casts without any luck. I start to think about what fly I should try next: parachute adams, royal wulff, beadhead woolly bugger. 

At that moment, I hear soft “plop” from the lake.  The fly is no longer visible. I raise my right arm quickly, trying to set the hook, the fly emerges quickly from under the water – without a fish.  

Fly fishing is ritual mindfulness.  It seems that as soon as the future starts to steal your consciousness away, the fish and the water remind you of the pressing need of the present. 

The trout, the line, the rod, the fly, the wind all demand such attention that you cannot enjoy fly-fishing without being a 100% present.  When the mind wanders, you inevitably miss a strike, or catch your fly in stream-side brush.

Only 100% of you will suffice when fly – fishing.  No less.

Heed the Lesson

I take the hint.  I stop casting.  Taking the elk-hair caddis in my fingers, I cut the leader and place the fly back into my box.  I take out a woolly bugger and carefully attach it to the leader.  After checking its fastness, I hop back to shore.

I walk to the other side of the lake where the mountainside plunges in the water with rocky abandon.  Balancing on loose rock and snow I manage to dance over to a sturdy ledge which gives me lateral access to a cliffshelf.  Beginning to swing my arm, I let out the line again. 

I hear the bedhead plop softly into the water in front of the cliff as I finish the cast.  Waiting 20 seconds, I let it sink deeper into the water. 

I begin a slow figure of eight retrieval of the streamer.  The line gently wrapping around the fingers of my left my hand.  Suddenly, the line tightens and the tip of the rod bends sharply.  

The Fish

I firmly and quickly raise my right arm, I can feel the hook set well.  The fish cuts to the left, the line singing as it splices the water’s surface.  I can feel the strength of the fish – normally fish this high are small and hungry, barely fighting. 

I slowly give the fish some line, keeping the rod bent in the process.  The fish takes the extra line and jumps.  It sparkles in the alpine sun as it sails 18 inches about the water’s surface.  

I let the fish play for another 30 seconds or so and the resistance slackens.  I begin to retrieve the line again.  The fish protests, but with less vigor.  The distance between him and I narrows.  Soon, he is next to the ledge I am standing on, inches below surface.  A beautiful fish.  

With my left hand keeping the line taut, I extract him from the water with my right.  Placing him on the granite ledge and holding him in place with my left hand which still has the rod, I deftly grab my needle drivers and thread them into his mouth, catching hold of the hook and removing it.  

I gently place him back in the water and watch him swim off into the deep, clear water.  “That was a nice fish,” I say out loud. Only the wind responds.

The Moment

I clamber off the the ledge and over to my pack. Laying my rod against the pack, I sit down.  I take in the mountainside, the lake, the upper coulee in the distance. Snow still hangs there in the shade.

I watch a shadow of a cloud glide across glacier-scoured granite mountainside, a golden eagle rides a thermal.  The cloud reminds me of my daughter and how I would have like to have shared these moments with her.

I welcome the stinging sadness and let myself feel it fully.  It feels needed.  I breath the thin air deeply as a few tears form.  Not a wailing, gnashing of teeth kind of pain, just a simple reminder of a love lost – yet still here.  

I stop short of mourning the high country fishing trips we never had.  Because we never had them, the future has not yet been and never was.  Hell, she might’ve hated fishing, I don’t know.  But it is nice to sit and pretend we would have done this together. 

So, I sit for a while longer, feeling her fully.  100% present in this moment of grief and joy and peace.  For a short time, I am nowhere else. 

My First Death Cafe

It takes the whole of life to learn how to live, and – what will perhaps make you wonder more – it takes the whole of life to learn how to die.

-Seneca

growing closer to loss

Until my wife and I both welcomed our daughter and ushered her out of this world within the span of a month, I had had little personal experience with death or loss.

Roadside Grave, Kinney Rim, WY. Author’s Own Work.

I grew up far from extended family.  I had no close relationships with older adults such as grandparents, and so their deaths did not affect me very strongly.  As such, I had not really observed much death or loss until residency.

Nonetheless, in residency I frequently led end-of-life care and goals of care discussions.  I was good at them, able to connect with families and patients, elicit their values, and move care in the appropriate direction.

I found the discussions gratifying.  It always felt like important work – real doctoring.

In clinic, I felt many of my patients were lost or stuck in regards to their physical and mental health and often life in general.  I did not have an inherent understanding of how people ended up in these states of life-limbo.  Over time, I came to feel that it was related to loss and our relationship to it.

As I did not have much personal experience with loss, I took to reading about it.  In particular, The Illness Narratives gave me a framework about how to understand the nature of repetitive loss and eventual death as a clinician.  This clinical research was a helpful backstop when faced with confronting death in my own family.  At least I had a framework.

death becomes him

Moreover, because of my clinical background in loss and death, the behavior and lack of acumen of my partners shocked me.  Compassionate and attentive clinicians with their patients, they were emotional ogres when it came to a fellow clinician.  I have since learned this is unfortunately fairly common in medical culture.

Our wider culture’s inability to engage with death shocked me less, but was still striking.  When grieving, even well-meaning people mostly just want you to feel better.  Your grief is disquieting and the assumption is that if they say something to make you feel better, everything will be ok.

Announcement:  When someone is grieving, everything is not okay.   Yet, that is natural.  That person’s world has been unmade, and they are relearning how to live in it.  It is supposed to be difficult and sad – that’s normal.  As a bystander, this is what you need to know.

My experience led me to seek out venues of personal healing, but also how to engage with the wider world about death.  We need to be better at this.  Our culture cannot afford – both materially and spiritually – to continue to view death as as optional – something to avoid. This is how I stumbled upon Death Cafes.

Death Cafes are simply groups of people who want to talk about dying, death, and life – to demystify the experience.  The movement started in 2011 in Britain and has spread around the world.

my first death cafe

So, I found a Death Cafe in my area and decided to go, not entirely knowing what to expect.  My wife agreed to come with me, though she was a little reticent.  Of course, we showed up late, sliding into the circle surreptitiously.

The circle was bigger than expected, 20-30 people.  A few were veterans, a few more had come only for the second time, and many more were first timers like us.  It was heartening to see it so well attended.  People were from their early 20s to their 80s.  The group was overwhelmingly female.

We went around the circle introducing ourselves and our reason for attending.  One man had simply been sitting in the area of the bookstore the group reserved and decided to stay.  Others were wrestling with their own grief, their own mortality, or simply had a desire to have a discussion about death openly and freely.

GINA

After introductions, one young woman erupted with emotion.  She had suddenly lost her father to cancer about 18 months prior.  They had been extremely close, he had been her rudder in the world.

Her grief and anger and a sense of injustice continued to possess her.   She was trying to learn how to evolve.  Her family were unequipped to have these discussions, so she was looking elsewhere.

She came to a room full of strangers, looking for answers.  It was a courageous act, to engage with her emotions and death openly and honestly.  It was plain to see she was struggling.  The group did not recoil.  Collectively, everyone leaned in, nodded, and listened.

As someone who has been through a great grief recently, it is hard to overstate how rare this experience is in modern America – to have strangers engage in your grief with you, without discomfort.  It is otherworldly, almost magical, especially in contrast to everyday life.  Even 10 years ago, this space did not exist.

the flow of conversation

The rest of the conversation flowed in an easy back and forth, remarkably civil and deep given the current public discourse in this country.

We touched on differences in how men and women deal with death and emotions, how you go about buying urns before you die, the fear of death and dying, and impermanence in general.  We came back to Gina’s grief once or twice.

In the end, we went back around the circle and people where able to express one or two thoughts they had not had the chance to express during the open discussion.  Overwhelmingly, people were simply thankful for everyone showing up, sharing, and being open.

My wife and I left feeling remarkable uplifted, even more alive.  It had been intense, Death Cafes are generally held monthly, and I am not sure we could handle them more frequently.  Nonetheless, the experience had been life affirming, not morbid in the least.

everything gets a return

The great Stoic philosophers had a phrase for this: Memento Mori.  Seneca and others recommended a daily practice or remembering and accepting death as a way to remind ourselves of our wondrously short lives and that nothing is guaranteed.

They argued the practice increased happiness because to helped us live our lives more fully.  I have not adopted the daily practice, but if it is anything like what experienced after my first Death Cafe, I think they were on to something.

Our culture is out of touch with Death.  We close it up, hide it, shaming public expressions of grief.  The daily practice of remembering and accepting death is a big ask in our current culture.

However, an open space to confront death in community may be a good place start.  This is what Death Cafes provide, a welcoming community of people on different stages of the journey towards knowing and accepting to death.  The experience was remarkably life affirming – I know we’ll be back.

Questions?  Thoughts?  Please comment below.

Palliative Care Consult: Dad

Patient advocate – new father

My daughter’s neonatologist and I stood close facing each other, cramped at the foot of my daughter’s isolette in the NICU.  She was only 2 days old and on a ventilator.  He had just finished updating me on her bilirubin and other labs, as well as her imaging.   I honestly didn’t care.

Most physician parents would have wanted to know all the data, all the lab values, etc.  I had complete confidence in a level 3 NICU to replete potassium, manage a ventilator, and correct neonatal jaundice.  All routine things in a NICU.

I was steeling myself for a more difficult conversation, one I had had dozens of time before.  But before, the conversation was about a patient, someone behind the emotionally safe distance of the doctor-patient relationship. This time, the end-of-life discussion was for my own daughter.

I felt I could broach this subject with our neonatologist early.  He had told my wife and me that our perfect, beautiful, newborn daughter was in fact not healthy.  He had done it in a straightforward and kind way.

After the first two or three questions from my wife he stopped her and said, “Those are good questions.  We will answer them as we can, but right now, you need to go fall in love with your daughter.” So we went to her bedside and did just that.

So, I stood in front the neonatologist, both a father and a physician.  I started to speak.

Jebediah’s Story

As a clinician, you never know when you are going to stumble across a gift that a patient has given you.  Sometimes they are obvious, even physical.  Other times the gift is knowledge and insight you would never have gained if not for the intimacy of caring for them.

Jeb gave me and my wife one such gift, and in a round about way, our daughter as well.   Jeb was a very sick toddler who was frequently in and out of the pediatric hospital I trained in.  He had been born very early, a twin.  His brother, Alex, had fared better than him.  Alex had developmental delay, but otherwise a fairly healthy 2 year old.

Jeb was a very cute kid.  His language skills were not well developed for his age.  His only verbal communication was limited to blowing raspberries in various tones that correlated to his mood.

As residents, we would walk into the rooms gowned in protective clothing.  Once into Jeb’s room, we would turn to see Jeb standing in the hospital crib, nasal canula secured to his nose, belly protruding outwards, blowing raspberries to get our attention.  Heart=melted, every time.

Jeb had bronchopulmonary dysplasia (poorly developed lungs as a result of his premature birth), he was chronically oxygen.  Additionally, he had Hirshsprung’s Disease (improper nerve development in the colon), this could lead to bouts of constipation and bloating so severe that it would compromise his lung function.

Jeb’s illness put an extreme burden on his mother.  She was a single parent who lived about 90 minutes from the hospital in a small town.  Any slight cold or virus would send Jeb into the hospital.  His mother did all she could for him.  His health was so fragile that she lived her life around him and his illnesses.

During one of his hospitalizations, Alex was with him.  Alex had a small tricycle that he was riding around in the hospital room. He rode it up to all the hospital staff, stopped, smiled and waved.  He occasionally even spit out a few words. His mom never took her eyes or attention off of Jeb.

In that moment, I saw all the sacrifices this mother was making for Jeb.  Time, money, energy, sleep.  Also, I could see she was sacrificing Alex’s share to Jeb.

Alex was still in need of extra support and therapy, yet compared to his brother, was the picture of health. Even if a mother’s love is infinite, nothing else in this world is.  At some point, she had to take from Alex to give to Jeb.

Jeb was so sick.  His lungs weren’t going to “heal,” this is the way they were.  The airways would get bigger, but he would never have healthy lungs.  His colon would never develop the nerve endings that it lacked.  I left the hospital that day a little devastated.

I couldn’t get over the image of Alex, who needed so much, being ignored because his brother needed so much more.  The collateral damage Jeb’s health was causing seemed obvious.  I even talked to his pulmonogist at one point, whose statement, “Jeb is a very sick, complicated case,” seemed to say it all.

Jeb wasn’t going to get better, we were just “managing” his illnesses.  All the doctors knew, Jeb would probably at some point die of the complications of his birth. Indeed, about a year later, he did succumb to complications of a respiratory infection.

This does not mean Jeb’s life did not have purpose and was not worth living. On the contrary, Jeb clearly brought a great deal of joy to those around him.  However, that joy came at a very real human cost, to both his mother and brother.  Like so many other parts of life, there is no such thing as a free lunch.

Jeb’s gift

That night, I staggered into the house, emotionally punch-drunk from the existential quandaries I had dissected during my shift.  I laid down next to my wife in our bed and told her Jeb’s story.

We laid on our backs staring at the dark ceiling.  I asked my wife, “What if we have a baby like Jeb?  Are we going to hook our child up to machines and oxygen, knowing what we know?  Is any life for our child worth any sacrifice? Both our child’s and ours?”

We discussed this at length.  My wife cried and hugged me.  In the end, she said, “No, if we have a child like Jeb, we will love him or her sooo much, and let him or her go.  That is no life for our baby.”  We hugged again, rolled over, and drifted off to an unnerved sleep.

Neither of us had any inkling that 3 years later we would be sitting next our daughter’s bedside in NICU and thanking Jeb for that conversation.  We continue to be so grateful for the gift he gave us.

back in the nicu

Back the foot of our daughter’s isolette, I started the conversation with our neonatologist.

I began, “I know we still don’t know much.  But, you don’t have to do what we do for a very long to see a lot of therapeutic creep.  More than anything, I am worried about her ending up on long term ventilation, with a G-tube, never being able to live without a machine.”

Continuing, “Again, I know we are waiting for more information from tests and imaging to see if we get more answers.  I also know a significant chance exists that we will have to make a decision without a discrete answer.  As an experienced physician you get a feeling, a gut feeling, about how things are going to turn out.  That might be the best information we get.  I just ask you to tell us when you have that feeling, because we are ready to have the conversation.”

His response was measured, but honest, “I am not there yet, but I am glad you are bringing this up.  Certainly, the possibility of tubes and long term ventilation are real.  I want to know I agree with you.  Just because we can do something, doesn’t mean we should.  I will let you know when we have to have that conversation.”

being your daughter’s palliative care doctor

That was my first, but not last, instance of feeling like I was my daughter’s palliative care consult.  I spent a good bit of our time in the NICU having similar discussions with nurses and, eventually, the hospice team.  Frequently, I felt like I was in between two worlds.

I was translating our values and emotional state into medical speak, because I knew that was the best way to advocate for my daughter.  Code-switching back and forth between the human and medical seems to be beyond many clinicians.

It took a great deal of effort to be both a physician and father in those days. Yet, it was a rare ability and gift I was able to offer my daughter.  I want to give a shout out to my counselor for teaching me to view it that way, instead of the burden I had felt it to be.

In the end, when we said we wanted to take our daughter home to pass, it was a groundbreaking request for that hospital.  It had never been done. Nonetheless, our neonatologist and the hospice team were amazing.

By Zerbey, CC BY-SA 3.0, Photo by Chris Horry at Arnold Palmer Hospital in Orlando, Florida, November 2002. Source Wikimedia Commons

My wife and I decided that we didn’t want 100% of our daughter’s life to have been lived in a windowless NICU.  At one point, I said that if we could at least get her into the parking lot, where she could feel the sun, I would have been satisfied.

Yet, we were able to take her on a 45 minute drive through the mountains to our home.  Our neonatologist came on his own time, the one who extubated and pronounced her.

We sat in the dappled shade under the pines, holding our daughter for the first time without the ET tube or ventilator to worry us.  He told that us that some of the nurses had asked him if we were doing the right thing.

He had apparently told them, “This is the ONLY right thing.”

It’s the High Lonesome for a Reason

The plain gives man new and novel sensations of elation, of vastness, of romance, of awe, and often nauseating loneliness. – Walter Prescott Webb, The Great Plains (1931)

By Leaflet – Own work, CC BY-SA 3.0, Source: Wikimedia Commons 

Yet, America remains attached to the idea of Yeoman farmer and the rural bucolic existence.  It lays deeply burrowed in our collective mythology.  Many people who live in small town America are very proud of this association. Indeed, I have been to some places that seem to live this ideal every day.  They are very rare.

rural america is no spring chicken

Firstly, Rural America is much older than America as a whole (interestingly, the places where this is not true are largely in areas where refugees and immigrants are moving in to work in industrial agriculture – but we won’t touch that lightning rod for now).  Some of this age difference is due to youth moving to cities and larger towns for jobs.

However, I also increasingly hear narratives about people on fixed incomes – the disabled, the elderly, the rare retired military, government, or railroad worker who actually receives a pension moving to the small towns because of affordability.

This is especially noticeable in places not too far from larger towns/cities on the borders of the High Plains.  So, young people are leaving and older people moving in – a demographic double whammy.

what kind of person retires to high plains?

It takes a special kind of soul to thrive on the High Plains.  You have to love the sky and the wind and the sun.  You also have to be pretty self-reliant.  Self-Reliance is the central tenet of High Plains life, help is usually not close and may be unreachable.

Unfortunately, no amount of grit or curmudgeonliness will keep you healthy and independent forever, though it does seem to help.  I have seen dozens of people who retired to a rural area and bought a small acreage in their fifties or early sixties when they were still quite healthy.

This seems to last a good 5-10 years.  Property is a lot of work.  Roads may be plowed by the county after a snowstorm, but your driveway won’t be. A half-mile snowed-in driveway is a glacier to a wheelchair.  Moreover, 48-72 hours may pass before the county gets the road clear.

chronically ill in the middle of nowhere

One of my first patients in my real practice was Kathleen (obviously not her real name), an older woman who was supposedly in for a diabetes check up and establish care.  We sat down to go over her A1C and her medications.  A quick chart review revealed that she was undergoing treatment for Stage III-IV ovarian cancer, at 79.

Ovarian cancer that is this far along is not a curable disease.  It is what the patient will die from (if the treatment doesn’t kill them first).  Kathleen had already gone through surgery, chemotherapy, and radiation.  She was struggling to keep her medicines straight.

Her oncologist had told her this cancer was incurable.  Despite this, she still suffered through treatments thinking that a cure was possible.  We had hours of conversation about goals of care, she still wanted treatment.  It took me a while to understand this, seeing how much she was suffering.

caring for the seriously ill requires community

She lived on 2 acres on a gravel road, miles out of town.  They could be snowed in for days at a time.  She was too weak to cook for herself, she was losing weight.  Then I met her husband, he had significant dementia.

SHE was the caregiver in the relationship.   She felt she couldn’t leave her husband and his dementia made it impossible to reason with him. Children were in other states and not helpful.  Elder protective services were involved – but to no avail.

She was in and out of the hospital and the ED.  When you have no one to give you a ride and you are not doing well, the only option is the ambulance.  An ambulance can only take you to ED.   Discussions about nursing homes, hospice, assisted living went nowhere for over a year.

In the end, she had a chronic pneumothorax with an indwelling chest tube with a valve. She was constantly in pain and short of breath.  Finally, one of my partners transferred her to a hospice house an hour away, almost against her will.  She was simply too weak to fight.

This is an extreme example, but it is easy to imagine a bunch of hardheaded, tough people who are now on oxygen due to smoking, or with arthritis and limited mobility, or early dementia as yet unnoticed (no one has visited grandma in 6 months).

My experience doctoring over the last 2 years around rural America has left me feeling that the social isolation of rural America is literally killing people.

social isolation is a growing epidemic

The New York Times has written 2 articles on it within the last 2 years.  Additionally, an increasing amount of psychological and health publications are delving into the risks of social isolation, and it is more acute in rural areas.  These risks even include increased mortality.  This risk can be up to a 50% increase.

As a traveling doctor, I often feel powerless in the face of these realities.  I see people in the ED who are just destined to float back and forth between the hospital, nursing home, home (see hardheadedness above) and back until death or a permanent stay in the nursing home.  And I often just feel myself helping keep the assembly-line moving, unable to help renew the sinewy bonds of community.

Loneliness, thy other name, thy one true synonym, is prairie. – William A. Quayle, The Prairie and the Sea (1905)

On quiet evenings, when I walk around the edges of the little High Plains hamlets where I work, I stare up at that fantastic sky and think about my own isolation.  Watching the windmills turning wind to electricity on the ridgetops, I find the space to feel my loneliness.

By USFWS Mountain- Uploaded by Magnus Manske, Public Domain, https://commons.wikimedia.org/w/index.php?curid=21102582

The loneliest kind of loneliness is the that felt when surrounded by a sea of humanity.  The High Plains welcome those feelings of isolation.  The sky seems to open up and embrace the lonely. Some of my loneliness stems from the grief of losing my daughter, I know.  However, I also feel the professional isolation.

physicians are not immune

As I have said before, there are times where I am the only doctor in an area the size of Rhode Island.  I am almost never physically adjacent to others of my profession.

How does one stay connected to the community of healers without a home base? How do you discuss tough cases when you are the only one in the doctor’s lounge?

Increasingly, researchers are identifying feelings of isolation as playing a role in physician well-being and burnout.  I know that the isolation I felt in my acute grief and how my partners reacted was worse that than anything I feel now.  It is one thing to be lonely by physical distance, another when social and professional exclusion and competition isolate you.

I think that the rise of the physician blogging community is a reaction to these feelings of isolation that we have in our work space.  Physicians are supposed to be social people, to connect with people.  We need our community to thrive.

Self-reliance and rugged individualism appear to be contributing to significant suffering and premature death in rural America.  Am I too at risk?  I don’t know, but I am trying to do something about it, and hopefully it helps.

 

A Birthday without the Birthday Girl

Wandering the Desert for A Year

landscape sand desert dune wind dry natural park outdoors dunes national shadows ripples grassland hot plateau habitat ecosystem sahara wadi death valley landform erg natural environment geographical feature aeolian landform

Death Valley Sand Dunes – Public Domain

The memories of a child lost so soon after birth are the definition of bittersweet.   A birthday is supposedly important, a time to celebrate.  Everyone else seems to think so.  People have sent us birthday cards, notes, texts, things to let us know they are thinking about us.  They are all very kind and sweet.

a day to remember

However, everyday for the last year has been a day of remembrance for my wife and I.  For her especially, there is someone palpably missing in the ether.  She feels it deeply, in a corporeal way.

In beginning, the world seemed a darker place.  Colors had less shine and everything was off kilter.  I notice those thing less nowadays.  Yet, I still haven’t decided if that means that things are brightening, or I am just forgetting what the world was like before our daughter left?

the sun came up today, like it usually does.

In the end, today is just another day without her for my wife and I.  The difference is that other people are thinking about her and her absence.  They are letting us know they remember.  Again, it is bittersweet.

The notes and cards and flowers are a helpful reminder that we are not alone in our grief.  Grief brings a sense of emotional solitude, so it is nice to have that reminder of others.

On the other hand, the notes are also reminders that my wife and I share a solitude in our grief.  We don’t get to take a day off.  We can’t choose to get off the grief train for a while and rest.  We are always there.  And, as far as we can tell, we aren’t going anywhere.

life in the hessian crucible of grief

Grief is a crucible.  The forces that it brings to bear on a person are immense.  Yet, crucibles are amazing tools for reshaping things.  Metals are melted, combined with strong reagents.  In the end something, hopefully stronger, emerges at the end of reaction.

Chemical reactions can go poorly.  Reagents in wrong amounts, too much heat, rapid changes in temperatures, etc.  These can force the reaction to go terribly, terribly wrong.  On the hand, the reaction can get stuck in a chemical purgatory.  The reaction has transmuted the initial components, but not delivered the final product.

The same is true for grief, it defines us for a time.  We must let melt into our identity, where it can combine with the pre-existing pieces of our being.  However, we must be careful.  If we hurry it, if we had too much pressure too soon, things can go very, very poorly.  If we ignore it, if we do not tend it, we can become moored in a netherworld.  There we may stay, beyond the reach of who we once were, but not delivered into we might have become.

to live a life in 3 weeks

Over the next three weeks, my wife and I will live through the entirety of our daughter’s life, one year removed.  It seems a strange twist of fate that it is an entire life.  Yet it is.  On a long enough time-line, 3 weeks and 90 years are indistinguishable.  They are equal in their measure – lifetimes.

And her presence was immense for someone who couldn’t even muster 5 pounds.  As measured by the emails, the cards, and the dozens of people who travelled from around the country to meet her during her brief time on this plane, she was mighty.

So, my wife and I enter the bittersweet season of her life.  Three weeks, forever marking October in our minds.  We walk along in her shadow, remember the beauty and the loss.  For you cannot have without the other.  Grief is the shadow that beauty and love cast when they are lost.  Yet, I would rather live in a world of shadows than one without light.

 

Tom Petty was wrong, it’s not the waiting, it’s the “being with” that’s the hardest part.

Dr. Sanders had been dying a long time. Bald and infected, quiet and cachectic, he was getting his life in order. We were friends. He was dying with a calm strength, as if his dying were part of his life. I was  beginning to love him. I began to avoid going into his room. 

"I understand," he said, "it's the hardest thing we ever do, to be a doctor for the dying." 

Talking about medicine, I told him with bitterness about my growing cynicism about what I could do, and he said, "No, we don't cure. I never bought that either. I went through the same cynicism— all that training, and then this helplessness. And yet, in spite of all our doubt, we can give something. Not cure, no. What sustains us is when we find a way to be compassionate, to love. And the most loving thing we do is to be with a patient, like you are being with me."

-Samuel Shem, House of God
high plains doctoring

The other day I was out on the High Plains, doctoring.  In this particular location, the ED isn’t very busy, so I also cover a walk-in clinic at the same time.  Usually, this is standard urgent care type stuff.: kids with fevers, ear infections, sinus infections, headaches, bronchitis.  Occasionally, I get a follow up from some other practitioner and I have to piece together what was going on, what the plan was, and what is going on now.

I looked at the schedule: follow up rash – not getting better.

This particular patient received one opiate medication as a refill accidentally instead of her usual one and she had developed hives from it (a known personal reaction, apparently).  She completed course of montelukast, prednisone, and H2 blocker about 10 days ago and got her opiates straightened out.  Initially, she improved, but once she finished the prednisone, she continued to get daily itchy, red, urticarial (hive) rash. It was temporary with no discernable trigger. She did not have a rash in the visit.

Normally, this would be pretty robust hive regimen and, for a single exposure, should have taken care of it.  She had no known other exposures or new foods/soaps etc.  So, I asked her about stress.  I have already seen a few cases of stress urticaria in my short career.  People are generally much more willing to talk about stress in their lives than their “mental health” or “anxiety.”

Critical Access Hospital Medicine Truth #1: You are more likely to find artisanal kimchi on the High Plains than adequate mental health resources.

And the flood burst forth!  As it happens, she was nearing the 1 year anniversary of the murder of her grandson with whom she was very close and whom she raised as her own child.  On top of that, news was slowly coming to her about when the trial would start and, like all of these bureaucratic occurrences, it was start-stop.

Had she seen or talked to anyone about this over the last year.?

No.

Are interested in counseling?

We discussed places for counseling – there is only one mental health service in this area – an hour away – and they have a bad reputation in this community, so she wasn’t interested.

We discussed a pastor/clergyman, this was a possibility.  Her grandson had been close with a local pastor, I encouraged her to talk to him about her grandson.

Grief is not a disease, it should not be anesthetized away.

And then she began to talk to me about her grandson, she told me stories, what he was like, how he cut his hair.  This is where the “just being with” can be strong medicine.  I cannot do anything to bring her grandson back.  Grief is not a disease, it should not be anesthetized away.  It is a necessary process and part of life.  But it MUST be witnessed.

So, I sat and listened – intently.  I probably didn’t say a true word, just nodded, for at least 5 minutes.  Try truly listening to someone for 5 minutes.  It feels unnatural.  It takes practice and intention.  Doctors are terrible at it – there are studies to prove it.  She cried.  I didn’t try to make her feel better, those who are grieving need to feel the sadness at times.  I was simply being with her while she felt it.

good doctoring can be a drug

After she had told me what she needed to tell me – again, I had never met this woman before – she thanked me for listening.  I recommended she meet with the pastor and talk about her grandson and gave her a prescription of cetirizine, to see if that helped – knowing that what she really needed was more people to bear witness to her grief and help her feel it, in a healthy way.

Today, I was able to be that person, because I don’t have productivity targets, because I am payed by the hour to simply “be” at the hospital and do what must be done.  That is not the norm in our system.

Even in my current situation, it is simply possible.  It is neither encouraged nor supported. For those of us who try to help people heal through our doctoring, that very act of “being with” is now an act of rebellion.  “Being with” ill and suffering people, when done frequently enough is now a fireable offense in the American Hospital-Pharmaceutical Complex – a.k.a.: not meeting productivity.

I emerged from that room cloaked in her grief.  For a short time, I had wandered the wilderness with her.  It felt meaningful and worthwhile; still, I was drained.  I had a moment of gratitude, because I hadn’t had to choose between “falling behind” and “being with.”  I had the time and energy to give to her and gave it freely, not begrudgingly.

Sadly, this is not included in the “standards of care” in clinics around our country.  As I got into my car to start the lonely drive home, I grieved for all people, patients and doctors alike, who are routinely wounded by our system.

 

What Could We Have Done Better….Part 2

Life’s Hard-learned Lessons

“If people bring so much courage to this world the world has to kill them to break them, so of course it kills them. The world breaks every one and afterward many are strong at the broken places. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially. If you are none of these you can be sure it will kill you too but there will be no special hurry.”

-Ernest Hemingway, A Farewell to Arms

After reading my first post, if you did,  you probably felt the anger, and there is anger.  However, anger is not the only thing left.  I have found a lot of a lot of comfort in literature and art over the last year.  Art has the ability to make the very sad also very beautiful, which is at times  is all we have to hang onto as we wander through the wilderness of grief – the beauty of life.

And in those wanderings, you learn a great deal.  You learn about yourself, about your spouse, your family, your friends, and the world at large.  If approached in a certain way, it can be a great gift.  Do I wish my daughter could have lived independently?  Absolutely.  Do I wish I could go back to being the person I was before?  No.

I am so much more rich and human than I was before.  Yet, I have been broken by a double grief.  The grief for a life with a child that is not here, but also the grief for a medicine that supports and heals – both patients and their community of healers.  I am comminuted, displaced.

By Bill Rhodes from Asheville – mid-shaft humeral compound comminuted fx lat, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=5784840

My anger is actually not all that personal.  I certainly would not count my former partners as friends, or even colleagues.  I have come to understand how deeply medical training unmakes and then remakes a person.  After 4 years of premed, 4 years of medical school, and 3-5 of residency with possible fellowships thereafter, you have been destroyed and remade in the image of Medicine.

It is often not for the best.  I do not think my former partners or administration were particularly good people, nor do I think they were particularly bad people.  I think they were products of the system, which it takes amazing strength and courage to fight day in and day out.  The system never rests, doesn’t take breaks.  It has no humanity.  Who is strong enough to confront that?

And there is the problem, if I just thought that I fell in with a bad group of people, then I could just find another practice and feel like everything would be okay.  However, increasingly, I think that what I experienced is the natural outgrowth of our current Culture of Medicine.  Over at the Happy MD he refers to it, in part, as the “Lone Ranger on a Gerbil Wheel Syndrome.” How can you save anyone else if you are drowning yourself?

Now, I find myself a nomad doctor on the High Plains, too wounded to try and commit to another organization, community, or practice.  Seeing patients I can do, but I have to use shiftwork to protect myself.  I am too vulnerable, I had grown to love primary care and find purpose in healing.  I cannot take another heartbreak right now.  With time, I may become strong again at the broken places, but the callous around the bone is fresh.

I am still “non-weightbearing.”