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.

Pilgrimage as kindness

 

My son William experienced his first pilgrimage walking the Camino de Santiago, the summer of his freshman year at The College of William and Mary. His professor and future mentor George Greenia led the pilgrimage. George has since become a family friend, and William has become our family’s maestro of pilgrimage, beginning with his sister, and then with his parents on the Camino. We have learned from George and now from William that no pilgrimage, and no pilgrim is alike, though there are common elements that define a pilgrimage: 

•  a beginning and an end, 
• movement along the route, 
• liminality in (holiness) space and time, 
•  the experience of beauty/awe/wonder, 
• a rhythm to life, 
• and perhaps a big question. 

Pilgrimage at life’s transitions proves exceptionally meaningful. 

Such was the case for each of us on the Camino de Santiago, 

 Such is the case for William and me now, traversing the glorious California coast in my cousin’s Porche Boxster, at the launch of life and advocacy with ALS. 

William is a currently a second-year law student at Columbia. He has a full and varied life in New York City. I’m pleased for him. I’m his dad, after all, and these successes and his happiness make me proud and happy. So, his invitation to drive me along the California Coast during his spring break, on the eve of my launch into ALS, was welcomed as an offering of great kindness and love. To be clear, he gets to drive my cousin’s Porche Boxster Convertible with the top down along the Pacific Coast Highway. AND, to be clear, I’m in the seat right beside him, for holy hours, in liminal time, along the awe-inspiring coastal roadway. Any parent knows, and EVERY pediatrician knows that any hope of an intimate conversation comes during a captive car ride. This has not been lost on William, to be sure. In a profound way, our roles have been blissfully reversed, and I am a gleeful captive.

Reasonable people, who know me well-enough have asked, post-ALS diagnosis, how it is that I am taking care of myself. It’s a fair question, and one that needs asking. Having ALS requires daily and rigorous care-taking. I swallow handfuls of pills every day, and pay close attention to diet, rest, and physical activity. Trust me, I’m totally into it.

These same people, I suspect, also want to know how it is that I am caring for the deeper parts of my self.  How am I taking care of my soul, now that I am facing down the complete disability and eventual demise of ALS? Also a worthy question that bears asking.

Regarding this, I have early data to report from the pilgrimage.  

Proximity to love and kindness begets trust in love and kindness. 

The meaning of pilgrimage comes from the doing of the pilgrimage.  

Abiding in liminality, with intention and an open heart, ready to embrace awe, wonder, and beauty creates a grand opportunity for meaning-making.  It's the most natural way I know of to care for the soul.

The path of love and kindness, and this on-going pilgrimage may be our best hope to make meaning out of the tribulations of ALS.  

As William said in the first hours after we received the formal diagnosis of ALS, after the tears, and shock had settled, 

"Well then, I guess it's time to get turbo-charged."  

Amen son.  Let's go!

Launching a pilgrimage of kindness

This blog began as a way for me to write about the fruits of kindness. Patients and families would often recount the simplest acts of kindness with immense gratitude, and it seemed relevant to share their stories. Perhaps their gratitude could inspire others. Perhaps my reflections on the varied examples of kindness could create a ripple of awareness for kindness as an essential component of compassionate, quality health care. 

I retired from the practice of pediatrics last month. I can claim 40 years as a clinician, having seen patients since 1982. The last 20 years have been dedicated to solo practice in Charlottesville, Virginia. My labor of love. And for the last 10 years, I added academic medicine to the mix as an Associate Professor of Pediatrics at the University of Virginia. A separate, yet related labor of love. 

In all of these 40 years, in all of the practice settings, I have been guided by something I learned from the dean of the Lienhard School of Nursing, in Pleasantville, NY, where it all began. She taught us that our primary task was to hone the therapeutic use of self. Over time, as we matured, the therapeutic use of our whole selves would guide everything else. Certainly, our intellect, our fund of knowledge would be a mainstay of expert care, and a key component of the whole self. Achieving intellectual competence, especially in training, generally takes precedence over everything else. However, the dean reminded us that our compassion, our communication, our empathy were equal and essential aspects of the whole self and would be needed at each encounter, to be used therapeutically to ensure true quality of care. 

To this list of therapeutic virtues, I add kindness, because it has a simplicity that is easily understood by any reasonable person. As an example, before leaving the bedside, a doctor asks simply, “Is there anything I can help you with before I leave?” Or the nurse arrives with a cup of cool water for the family member who has been up all night with an aging parent who has been admitted with delirium. Or, the clinician stops in the middle of the routine mechanics of patient care to respond with kindness and empathy, when hearing parenthetically about the unexpected death of a grandparent, or pet. Or, how about a simple, genuine greeting and introduction when entering the exam room. I’ve been warned that therapeutic boundaries become tricky when we introduce hugs and tears to the list, but they can also be part of the whole self. 

I am writing this while on a pilgrimage with my son, traveling the California Coast. It is a liminal time for me to explore the transition from doctor to patient. In December I was diagnosed with ALS, amyotrophic lateral sclerosis. ALS is a tragic diagnosis which portends a limited lifespan, and certain progress toward complete disability with the need for total care. There is no cure. The underlying biological cause is unknown, and the few available treatments have limited effect in altering the course of the illness. It’s a harsh reality. 

Many questions arise. What is the role of the self as a doctor-patient? How do I reflect or offer kindness in this new role? How might I engender kindness in the health care setting now that I am no longer the clinician? What are the gaps in ALS care? How can the gaps be assuaged or eliminated, especially those that limit the opportunities for acts of kindness? How does kindness inform advocacy? What are the fruits of kindness as experienced by me, the patient with ALS. And lest we forget, how is kindness germane to those who are walking the lonely road with me, my dear ALS family and friends? https://www.als.org/ https://iamals.org/

The blog returns to reflect on these questions, and to chronicle my on-going pilgrimage of ALS.