ALSTLS

ALS is always a grim tale to tell, and to hear.  Sorry.  

What if we could tell a parallel ALS tale that was the opposite of grim?  I have an idea.  Read on.

ALS, Amyotrophic Lateral Sclerosis, is generally defined as a progressive, neurodegenerative illness with no cure.  Often, this straightforward definition is embellished with a clause or two: 

• eventually leading to the inability to walk, talk, swallow, or breath.  
• including complete paralysis with intact cognition.
• being 100% fatal with an average life expectancy of 2-5 years. 

ALS is commonly referred to as a brutal disease; the disease most feared by doctors.

As I mentioned, it's a grim tale.  Sorry, again. 

Did you know that the functional decline that accompanies ALS is scored as a way of tracking the progression of the illness?  There is a 12-item functional rating scale called the ALSFRS-R:  48 points = A+ = no disability.

See details here.

• Speech
• Salivation
• Swallowing
• Handwriting
• Using utensils
• Dressing and hygiene
• Turning in Bed
• Walking
• Climbing stairs
• Dyspnea (breathing hard with activity)
• Orthopnea (difficulty breathing while lying down)
• Respiratory insufficiency

I am currently a 43 or 44.  I was a 41 or 42, until I taught Righty to use a pen.  Honestly, I could probably be a solid 44, if I used a rocker-knife.  After all, if we can enhance or adapt function to increase inclusion and participation, we diminish the disability.

It is worth noting here that Mr. ALS's march toward disability does not necessarily include mental, emotional, or spiritual decline.   ALS causes motor nerves and muscles to die. The thinking-mind remains completely intact.  Spirit, drive, passion, motivation, personality, the ability to give and receive love, all remain in full force.

Let us remember that intact abilities often compensate for innate or acquired disability.  People who are blind develop an exquisite sense of touch, smell, and hearing.  Kids with spina bifida who have never had use of their legs learn to scoot around as fast as their playmates and siblings.

What Lefty is losing in function, Righty happily takes on with aplomb.  

Joining the ALS community through organizations like I Am ALS, I am inspired by a fierceness of spirit, a courageous drive for change, a passionate desire to leave the world a better place.  These ALS champions and their loved ones are my new team.  Everyone is welcome.  Everyone gets into the game.  Kindness is not a zero-some proposition.  Love abounds.  Courage and hope prevail.

I understand the need for the ALSFRS-R.  But, wouldn't it be great to have a partnered scale to measure positive progress?  We could call it the ALSTLS.  The ALS Turbo-charged Living Scale, measuring:  

• adaptability
• humor
• kindness
• compassion
• hopefulness
• resilience
• altruism
• passion for creating change
• fierceness and drive
• advocacy for self and others
• ingenuity
• vision and meaning

What do you think?  Great idea, right?

The media

The Hummingbird Fund is gaining notice which makes me really happy.  Our mission is clear, and dare I say boldly stated:

Ending ALS. Starting with all of us.

The Hummingbird Fund stands on three pillars: access, innovation, and advocacy. We are on a mission to end care gaps for Virginians living with ALS, accelerate innovation to improve quality of life, and advocate for legislative action and research to end ALS. Through agile grantmaking, we work to help ALS patients and their families live full lives. Join us to help end ALS in this decade.

Hummingbird offers me the opportunity to use the experience I have accumulated from decades of work with families facing the enormous challenge of caring for a child with significant medical complexity and disability.  Moreover, I am lovingly joined by my family and hundreds of others whom I am calling the Hummingbird Champions. 

When invitations from the press started to roll in, you might imagine I would be delighted to share my passion for the vision of the Fund.  

My immediate thought was that this kind of carpe diem would be best delegated to my highly photogenic, uniquely poised, well-spoken family.

They declined, saying I was the man for the task.

So, I keep saying yes.  And you know, with preparation and some practice it gets easier.  I now see the media as a chance to share the ALS story, which has been side-lined for almost 100 years. 

Recently, Will Selden, a podcaster at the Virginia Health and Hospital Association, began his interview, asking, "So tell us, how are you doing these days." 

The question caught me off guard with its humanity. I thanked him for the question and its kindness, and then I answered as I almost always do, saying, "Oh, I'm fine." In this instance I elaborated with mention of the abundant love surrounding me.

I mean, no one wants to hear about me struggling to learn how to butter toast with my right hand, or the disappointment and fear associated with the gait-related side effects of edaravone, a medication I've been waiting to try for months, and one that required no less thank 20 hours of my time in the way of prior-auth's and payment schemes.

With the media I stay close to my talking points, allowing the daily realities to swirl like an imaginary cloud bubble above my head.

Some questions are fun.  Here's one that Will Selden used to close out our interview.  Feel free to try this at home and let me know your answers.

If you were stranded on a desert island, all alone, what one book (aside from the holy text of your choice), movie, and recording would you want to have along?

Ok, so here goes.  I will mention that I decided to go for diversity:

BOOK:   Mirabai Starr's recent translation of Julian of Norwich's The Showings

FILM:     Notting Hill

MUSIC:  Nina Simone "Pastel Blues"

Will Selden had one more question before signing off.  He asked for a bit of advice I had received that was worth passing along. My answer came immediately to mind, but I decided to place it in the context of a brief story.

When I was first diagnosed with ALS, I was at sea with knowing how to integrate ALS into my psyche, into my soul, really.  I revealed this awkwardly to a friend, who took a moment, then looked me straight in the eye, and with a gentle smile, said, "Just be yourself, Jim.  All you have to do is be yourself, and the rest will follow."

The Double Life of ALS

In a recent essay published in the New York Times, Mary Pipher reveals her double life.  

Perhaps you remember Mary Pipher, PhD., as the best-selling author of Reviving Ophelia: Saving the Selves of Adolescent Girls, and Women Rowing North. Or, maybe you remember her as a provocative guest on NPRs Fresh Air with Terry Gross.  

Her latest work, A Life in Light: Meditations on Impermanence, is currently on my Kindle.

In her recent NYT piece, Pipher states boldly, "Of course, I am leading a double life.  Underneath my ordinary good life, I am in despair for the world."  She goes on, "Some days, the news is such that I need all of my inner strength to avoid exhaustion, anxiety, and depression... In times like these, we need world-class coping skills just to stay fully awake, enjoy our lives and be of service to others."

Pipher shares insights from three sources:

Her grandmother:

                   "...be the person you want to live with every day of your life."                           (Forgive yourself, be whole and grow throughout your life--jpo) 

Psychology:

 

"the best way to cope with suffering is to face it... find ways to balance [...] despair with joy" (Find balance and wisdom in a double-life--jpo)

Thich Nhat Hanh:

"His deepest teaching concerned our interconnection with all life.  We all share the same consciousness..."  (Individual action in response to despair for the world adds to the shared consciousness for positive change--jpo)

Pipher is not alone in the double life.  I imagine most of us can relate to the need for inner strength as we attempt to face a suffering world, one that includes the turmoil in our own lives.  Like Pipher, we most often keep the double-life to ourselves, and share the sunny side with others.

Recently, I spent an entire day lobbying congress to: (1) increase funding for ALS research, (2) create new policy to hasten distribution of safe and effective ALS medications, and (3) address the inequities in ALS care.

Our team of ALS advocates met (virtually) with legislative aides (LAs) in 8 offices:  2 senate, and 6 members of congress.  We told our stories of living with ALS, and urged the LAs to take up our cause. We also listened to each other's stories, eight times over.  Having faced this challenge before, I came prepared with a 2 minute speech to remind the LAs that ALS is like no other adult condition in its rapid decline to profound disability.  I called on the LAs to remember this fact when they heard the ALS community calling for innovative and urgent legislative action.  

As the new team members shared their experiences of managing a life of disability and loss, I could feel the emotional toll crescendo.  For some, this was the first time they had publicly revealed their double-life.  We waited solemnly, holding the silence, when they got choked up.  We "echoed points" that others had made, as a way to show support.  And, occasionally an LA acknowledged their courage.   

In the late afternoon, I kept imagining how a post-game gathering at a D.C. bar would be a welcome end to an arduous day. No such luck.  At 4:30, we waved at our screens and clicked off:  zoom world at its finest.  

I lingered in front of my computer screen, trying to take in the day.  The stories and the emotion had infused me with the interconnectedness of a shared double-life.  I wrote short emails to each person on the team.  I thanked them for their fortitude, and their honesty.  I offered to talk.  It seemed a meager attempt at an email hug.  

As is typical for me, the emotional weight came the next day.  An ill-defined, slate-gray heaviness loomed large. I could not describe it, and I could not shake it.  A dear friend named it for me, saying I had a colossal emotional hangover.  

I muddled along, weary and somewhat confused.  Contemplation helped.  Time outside with Peggy and Delta brought color into the day.  Looking back, a simple meal and a good night's sleep seemed essential to the cure.  I felt restored in the morning.

Slowly, I am learning that our interconnected double lives need time for a re-set after these really rough days, even when they are not full of ALS legislative advocacy on zoom.  I need time to regain my balance to be buoyed back from the deep.  Mainly, I need joy, wonder, beauty, laughter, and affection to balance the darkness and to remind me that we are interconnected through our positive emotions and stories as well.  

In the future, I'll plan for the time to recover.    More time with Peggy and Delta Mae.  More time in contemplation, and doing ordinary tasks like weeding the garden, or making a pot of soup. Time to simply wallow in the love that surrounds me.

   

The pilgrimage continues

A few years ago, our son William led a pilgrimage along the Camino de Santiago in northern Spain.  He had a small flock of pilgrims, or peregrinos as they are known along the Camino.  Exactly two peregrinos: his parents.

William selected the route, made the reservations, provided the pre-reading and maps. He had been well-schooled by his mentor George Greenia at the College of William & Mary. 

On our first night, as we sat together preparing for our first walk the next morning, William suggested that we focus our daily conversations around some of life's biggest questions.  And, he had some suggestions for us to consider. (Like I said, he had been well-schooled.)

And so it went.  Each night along the Camino, at dinner, we would unpack the question for the next day.  As we walked, moving in and out of time together and time alone, we moved in and out of conversations surrounding the day's big question.

One of our conversations lingered across many days.  

Where is a God?  How do we know God?  How do we experience God?

Little did William know at the time, but his peregrinos had both written their undergraduate theses on topics in the Philosophy of Religion.  Peggy: The problem of evil and the nature of suffering.  Jim: The nature of a Deity in African Traditional Religions.

As I remember it, the conversations were wide and deep and satisfying.

I have no doubt that Erin and Hal would have enjoyed this pilgrimage and the exploration of Life's Big Questions, since our dinner conversations with them often move into the same open waters. 

This morning I sat listening for God. I sat with my coffee in hand, and I waited.  Our contemplation garden offers a natural calm for waiting. 

I soon heard the birds calling from every direction.  They had been calling before I set my ear to listen, of course.   Songs.  Stories of the night. Advertising jingles of love.

A sole female cardinal chirped to my right.  In a flash, she swooped into the Beauty Bush directly in front of me.  From 3 feet away, she looked me straight in the eye and chirped several more times. Cocking her head ever so slightly, she chirped at me.

This bird knows me.  She knows I sit in this garden most mornings, and she knows I will fill her feeder, which at this moment stands empty.  She greets me and she surprises me, and she reminds me to take care of her.  If I listen, she beckons my response.

The pilgrimage continues.

Proximity

Yesterday, May 12, 2022, my mom would have been 93 years old.  Peggy and I were on the National Mall with Lefty and Righty planting 6,000 flags to honor people living with ALS, and people who have passed away from ALS. Each flag bore a name and a date of diagnosis. 

A strong breeze caused the flags to flicker and buzz across the hillside, like thousands of plastic whirligigs on sticks.  To make it a bit easier to locate a name, the flags were loosely organized, alphabetically, in rows by first name.   Honestly, I was hesitant to look for my flag.  I was not at all sure how it would feel to see my name among all the others with ALS. 

 

I walked the rows like a gardener inspecting Spring seedlings.  I saw Jims, and Jimmys, and Jimmies, and Jameses.  Row upon row upon row, I walked silently, sometimes kneeling for a closer look.

When I came upon my flag, with my name, and my age, I felt a surprising  affirmation in my chest.  I felt solemn, and connected.  I sensed that I was among new kin.  I felt whole and at peace.

An hour later, my son William and I addressed the assembled gathering.  We chose a call to action as our offering. "The voices and stories of people effected by ALS will be the driving force of progress.  Our activism, our 'good trouble' will be our hope together."

Many of yesterday's speakers had very little voice left due to the advancing muscle weakness from ALS.  We leaned in to decipher their words which were often too soft or garbled to fully understand.  As you might imagine, wheel chairs of all shapes and sizes cruised among the ambulatory.  Children darted in and out, and our dog Delta Mae stole the show, making her way into dozens of pictures.  Everyone wanted a selfie with Delta.

The day was also full of tears.  ALS, after all, is steeped in loss.  Loss of function.  Loss of dignity and autonomy. Loss of futures. And, eventually loss of loved ones.  People wept for themselves, for their families, and for those they have lost.  People cried tears of rage and frustration.  They cried for each other.

And, in the space of hours, Peggy and I connected with people from all over the country who are at every stage along the ALS journey.  We hugged people whom we have only known via zoom.  We thanked people for their inspiration and their courage.  They hugged us back and they meant it. 

This event was equal parts rally and reunion.  Speaker after speaker remarked that  this small group, who shared an intimate knowledge of the ALS journey, had become a kind of family for them.   Folks who were farther along the path welcomed those of us who were new to the journey.  In that way, it felt like an equal part church.

Bryan Stevenson often sums up his public lectures with a call for greater proximity to injustice.  He rightly surmises that those with proximity to the problem have the best hope for an authentic, meaningful solution.  By analogy, the closer the proximity, the truer the response.

Tears, it occurs to me, are a true manifestation of authentic proximity.  So are the spontaneous hugs that hold you close, belying social custom. 

The Launch

"I hope you know how loved you are!"  "You are so loved."  "People love you."

Over and over and over again I have received these sincere exclamations that are meant to remind me of the bountiful love that surrounds me.  I am most often without adequate words in response.  

Usually, I begin by looking down at my feet.

Then, I say something like, "the feeling is mutual."  Or, I talk about the relationship that has fostered the love.  While all of this is certainly true, the words do not match the magnitude of the experience, no matter how earnestly I try to make them sound.

Love en masse can be overwhelming. . .

. . . which is no excuse for minimizing the response.

Overwhelming love calls forth gratitude beyond words. 

For this crowd, overwhelming love definitely means showing up. 

Abundant love is meant to be thoroughly enjoyed.  Don't you agree?

Enjoyed with great good humor. . .

...and wordless, heartfelt embraces.

This kind of love is meant to be shared.

The Hummingbird Fund is now a dream come true.  My family and I have a new labor of love.

Through the Hummingbird Fund we will be able to dramatically improve the quality of life for families living with ALS.  

(contact us: thehummingbirdfund@gmail.com)

We are grateful beyond words, and we have meaningful work ahead. 

 

Giving up Death for Lent

This year I decided to give up death for Lent. 40 days and 40 nights to put aside any thought about death. It would be like a Death fast. If you can give up chocolate for Lent, why not death. Jesus spent 40 days and 40 nights alone in the desert, fasting and facing down the Devil. By custom, the 40 days of Lent are used for inward reflection to renew and deepen faith. Colloquially Lent means forgoing a vice, perhaps to commemorate Jesus’s time in the desert, perhaps to assuage guilt or shame. It is written that Jesus used his time in the desert to prepare for his earthly ministry. In recent years, I have chosen to alter the tradition of Lent by taking on a new challenge or discipline. I have used the 40 days to explore a practice that might add to my spiritual development. This approach has seemed more positive, and less likely to end in failure. I have convinced myself that this approach is less about symbolic atonement, and more about embracing God’s presence. Giving up coffee, red meat, or bourbon would begin as a well-intentioned sacrifice, and generally end poorly. Truth be told, these kinds of Lenten fasts never really did much for me.

Earlier this Spring, our daughter and son-in-law invited Peggy and me to join them for a few days in the high desert of Joshua Tree National Park. The cactus and the Joshua Trees were just coming into bloom. The days offered bright sunshine and radiant blue skies. The nights were silent and cold, with endless stars on cloudless nights. We hiked for hours during the day, awestruck, grasping for superlatives that might approximate our experience of wondrous beauty. Here are Joshua Trees in bloom:

The desert landscape is known for its allure to contemplatives and ascetics. I had always imagined this was largely due to the desert’s silence, stillness, and open space. Joshua Tree taught me about the beauty and peacefulness of the desert. I experienced it as an inherently holy place to be.

This is my first Lent in The Land of ALS. Some might suggest the desert is an apt metaphor for living with ALS, because of a perceived bleakness to both landscapes. I’ll admit, since being diagnosed with ALS, I have experienced a sense of wandering in the desert. Every person has a unique path with ALS. There is no charted course that can be mapped out, like a trail in a national park. In the desert I was surprised to note that shades of brown, beige, and gray carry their own subtle vibrance. I’m guessing part of the reason for that is the paucity of other color. Likewise, I noticed that even the smallest cactus blooms draw attention. In the desert, the blue sky seems bluer. And the sunsets are like no other.  

This brings me back to my Lenten fast. Giving up Death for Lent, seemed like it could be a meaningful way for the landscape of ALS to surprise me with rare blooms, bluer skies, and sunsets like no other. 40 days and 40 nights of wandering in a new desert without fear or thought of death. 40 days and 40 nights to experience ALS without looking too far into the future. 40 days and 40 nights to prepare for a new life.

.

Kindness as Respite

I heard a new one this week.  That is, I heard tell of a simple triumph that caught me up short. 

A family recently put together the capital to buy a van to transport their 12 year old son who requires complete care.  The van came equipped with a lift and more space for his motorized wheelchair.  They were delighted to have new freedom to get around town and to his appointments with less effort.  The van also meant they could hit the road to visit family.   

Imagine you are on the road with your child and you need a pit stop.  It might be awkward to take your young son into the Ladies room, but it happens when they are small.   If your son is 12, they can generally manage on their own, with clear instructions about where to meet and an assurance to wash hands when he is done.

But if your 12 year old son is not independent, and you are traveling alone, what happens then?

This mom's solution:  a Cabelas porta potty for the van. 

Brilliant.  And, what a poignant reminder of the creative thinking, resilience, and unimaginable planning that is required to care for a child with significant needs.  

The porta potty for road trips also seems to me an apt metaphor for the nonstop life of caregiving.

This story got me thinking, once again,  about respite care.  My patients mention the lack of respite care all the time.  Most often it comes in an off-handed comment about how long it has been since they had dinner together, saw a movie,  went dancing.  One mom recently said, "I just want a couple of hours to go to Lowe's with my husband.  I'm so tired of trying to pick out paint with FaceTime."

Respite care is a necessary kindness in the life of constant caregiving.  

Who has not faced the dilemma of finding a sitter when you really need one?  Now imagine if your child has a tracheostomy, receives g-tube feedings, or needs a diaper change when he is 12 or 20.  The pool of sitters suddenly gets a bit smaller, and the risks of leaving your loved one loom larger. 

One small solution in my world comes in the way of undergraduate nursing students.  Our School of Nursing maintains a list of families needing respite care.   The students contact the families directly and work out the arrangements.  Frequently, the families grow close to the students and follow their progress through school.  It is a stopgap measure for sure--one more piece of the caregiving puzzle.

Not long ago, I visited a number of pediatric hospices across England.  Each health district in England has a pediatric hospice where families can utilized respite services.   For some families this makes a vacation possible, or a short trip for a family wedding or funeral. This seems such a sensible pubic service that respects and supports the family caregiver.  

Arnold P. Gold: A Legacy of Hope and Kindness

Ellen Seidman writes a blog called Love that Max: Kids with Disabilities who Kick Butt. In a recent post titled "You never forget the really kind doctors (or the not-so-kind ones)" she recalls an encounter with Arnold Gold, a pioneering pediatric neurologist.

Ellen's son, Max, suffered a stroke as a newborn.  She met Dr. Gold while Max was in the NICU and their world had turned upside down.  "Babies can have strokes?" she wondered in panicked disbelief.  What Ellen remembers most about Dr. Gold was his warmth and how he talked with them about what was possible instead of what was ominous. He concentrated on how they could help Max.  He provided hope at a time when their world seemed to be collapsing around them.

Arnold Gold saw patients until the age of 88.   He passed away in January, but a foundation named for him lives on.  It's mission is to support the humanistic passion that motivates clinicians to enter healthcare in the first place.  Here is their mission statement:

The Arnold P. Gold Foundation’s overarching goal is to create the Gold Standard in healthcare – compassionate, collaborative and scientifically excellent care – to support clinicians throughout their careers, so the humanistic passion that motivates them at the beginning of their education is sustained throughout their practice. We strive to ensure that care and respect always govern the relationship between practitioner and patient. www.gold-foundation.org


One of the signature innovations of the Gold Foundation is what we call the White Coat Ceremony.  The ceremony serves as a rite of passage for incoming students and is a way to elevate the value of humanism as the core of healthcare.  For physicians, it includes reciting the Hippocratic Oath.   Many schools now engage their students in a collaborative process to write their own oath which they will recite again at graduation.


In 1988, well into his academic career, Dr. Gold was conducting rounds when a new medical student presented a patient as the "the brain tumor in 209."  According to his New York Times obituary, Dr. Gold's response was just as you might suspect.

‘The brain tumor? Isn’t there a child involved in this? Tell me about the child, tell me about the family. Tell me how this is impacting on the family. Do you know any of this?’ ” 

Apparently, the student knew nothing of the humanity of their patient, and so began Dr. Gold's quest to protect and support the humanistic passion that motivates students at the outset.  He focused on what was possible and thereby has left us with an enduring legacy of hope and kindness.

The Legacy of Kindness

Health care is always delivered by a team.  The more complicated the clinical condition-- the more education or training involved in our care-- the larger the team.   Even when we are alone in the room with our patient, there are people outside the room who are arranging for labs and referrals, preparing a room for the next patient, answering the phone, giving shots or drawing blood, and most certainly there are people seeing to the details of insurance coverage, billing and collections.   Clear communication and efficient coordination across care teams are always a challenge. 

Some of the children I care for have 20 or more active participants on their team.  And the teams extend well beyond the walls of our clinics and hospitals.  Consider the special education teacher who supervises a g-tube feeding for her student, or the school nurse who gives daily medications that help to control my patient’s dystonia, or involuntary drooling or seizures.   Think about the whole range of in-home services for occupational, physical and speech therapy.  Respiratory therapists work with my patients who live at home on mechanical ventilation.  Care coordinators help to organize services and appointments and transportation.  Social workers are essential for support and the application for essential benefits.  Psychologists work with behaviors and coping strategies. 

Many of my patients have as many as 8 or 10 subspecialists who guide treatment and diagnostic work-ups.  It can be a dizzying array of people and personalities, each with a unique and active role on the team.   The families who need to manage the workings of a complex care team have seemingly countless opportunities to receive kindness or encounter more struggle.

Sometimes we--as individual members of the care team-- forget or underappreciate the vastness and complexity of the team.  We may overlook the synergistic stress that accumulates for the patient and their family caregivers as they move from appointment to appointment, decision to decision, fear to more fear. A routine appointment to discuss insufficient weight gain, could very well be a moment of brutal reality for a care-giver.  Despite arduous attempts, over months or years, with many skilled providers, their beloved child is not thriving, and today is the day when the realization hits home.

The kindness required at these points is no less necessary than at other moments.  A kindness deficit, however, is going to be glaring and memorable.

Kindness in the face of synergistic, cumulative care-giver stress can be as simple as a moment of silence.  Sitting quietly, with compassion for the emotion in the room, is a way to practice kindness.  Allowing for the care-giver to ask the same question over and over, as they try to take in what is being said, is another way to communicate kindness.  Stating clearly that we are not going to abandon the patient and their care-givers, when we have exhausted all currently available therapies, is perhaps the ultimate kindness.

When my wife is the attending physician on an in-patient care team, she meets with the medical students first.  She outlines her expectations for their successful and active participation on the team. Among her expectations are that they model kindness and compassion in two concrete ways.  First, they must include one descriptor that humanizes the patient.  “Mrs. X is a 32 year old English professor whose specialty is Dickens.  She is being admitted for.. . .”  “Mr. Y is an 82 year old grandfather of 12 who is very concerned about his dog Rex.  He is being admitted for . . . .”

The second required practice of kindness for medical students on my wife’s team is to be sure that the patient is put back together before the team leaves the room, and to ask the patient directly if there is anything more the team can do for them before they leave.  The student is responsible to model for the team these simple acts of kindness.  “Mrs. X, can I help you get your gown tied?  Here, let me get your tray table back in front of you so you can finish your breakfast.”  As the team prepares to leave the room, the student is expected to step up and ask, “Mr. Y, is there anything else we can do for you before we leave?”

My wife says that invariably the patients and their families are grateful, often returning the offering of kindness with their blessings for the team and their day.  “No, I don’t think I need anything else right now, but thank you for asking.  And you all have a blessed day.”

 There is, quite often, a ripple effect from the student’s kindnesses, as residents also begin their introductions with a humanizing adjective or clause.  In fact, there have been teams who get a little competitive to see who can discover the most insightful patient descriptor.  “Mrs. Z is an 88 year-old former Army nurse, who met her husband on a hospital ship during WWII.  She is being admitted . .”

Students remember these experiences of kindness.  Certainly, their offerings of kindness humanize the patients, who will ask for the student by name even after the student has moved on to another rotation.  The acts of kindness and consideration also humanize the students as future doctors.  The practice of kindness allows the student to build deeper trust and connection with their patients.  The complexity of the patient’s illness or disability is set in the legacy of a life, and encountered as another human being with whom they have a unique and privileged relationship.   Offering kindness has its own profound legacy.