I Shall Die. But That Is All I Am Going To Do For Death. (Edna Saint Vincent Millay, 1931)

Not many live like Francis of Assisi as portrayed by the Italian artist, Carravagio, contemplating a skull.  That portrait envisioned the Twelfth Century monk seeking the same kind of revelation that Buddhists have always sought in the meditative practice of Maranasati, the meditation on one’s own death.  Those who absorb the wisdom of these practices describe a greater realism about their lives, a kind of intentionality and an appreciation of their remaining days.  For less brave, less enlightened souls (i.e. most of us) serious illness and diminishment (inclusive of death)  are theoretical things that happen to others who are either unlucky or really old.  For my research subject, Mara, in December of 2020, at age 65, the theoretical suddenly took flesh in her own body.  A brief conversation in passing revealed that she had been diagnosed with a rare degenerative neurological disorder that seemed as if it would take away most of her capacities, and then her life.  In a thumb-nail sketch she gave me the broad brush strokes of that experience.  Contained within that bare bones outline, was the recollection of a crushingly beautiful exchange with her husband and sons.  It was that exchange that made me want to seek an interview with her to examine what her forced experience of Maranasati might reveal about the intentional practice of resilience, even in the face of death.

The Interview

Mara welcomed me into her comfortable suburban, middle class home that she and her husband have occupied for twenty-six of their forty-four years of marriage.  Together they raised two boys, now both married at 42 and 39 years of age.  Mara introduced me to the pictures of her current grandchildren—her oldest son’s five and three-year-old’s.  She explained that she and her husband, Paul, were awaiting their second son’s child any minute now!  A kind of simple elegance in art and architecture graced the open floor plan that glistened with morning light, prefiguring the quality of the interview Mara would provide me.  The well-ordered, characteristic to every room mirrored the way that she would tell me her story, and the way that I suspected she did most things in her life:  methodical, neat, but also with a great deal of open hospitality.  Everywhere I looked I saw evidence of a full life. 

It did not take long for Mara, the seasoned healthcare provider (Physical Therapy practice for forty years) , to get down to business.  Before I could drink a gulp out of the coffee mug she provided me, we were already into the thick of differential diagnoses and all things medical.  Once on the other side of her anatomy, and physiology lessons, I asked her to take me back and introduce me to the experience of her illness as it slowly insinuated its way into her body and her life.  

A Stealthy Intruder

 “At first, I wasn’t all together sure that I wasn’t just suffering grief from my mom’s long illness and death.”  In January of 2018, her 89 year-old mother finally succumbed after a series of fractures, health complications and Hospice.  Mara provided her mom medical power of attorney, companionship, and loads of care.  Death created space to catch up with her exhaustion and grief.  The knowledge of her dad’s death shortly before her mom’s decline, illustrated the weight Mary and her family bore for years.  

The story before the story involved a physical therapist who practiced what she preached.  For decades, yoga kept her strong and balanced.  Jogging kept her fit.  Over the course of ten years, she engaged in sprint triathlons (competitive event that includes:  ½ mile swim, 13 mile bike, 5k run).  Gradually, she began to notice odd things, like a lack of balance in yoga classes, the shower, and more troubling…work.  There was the precipitous ten pound loss of weight.   With the logical tool of “Occam’s Razor” in hand, she took her hypothesis, “This could all be grief,”  with her to her Internist’s office appointment.  A thorough physical exam, complete with blood work all came back normal, and seemed to validate that a round of grief therapy was in order. 

Despite grief counseling, the symptoms that had accumulated were growing.  Soon she noticed that during her customary runs, her “gate felt funny”.  She would “catch a toe” on her normal reps up and down stairs at the park.  The sprint triathlete, jogger, yoga practitioner, and normally fit PT, would take a rest while her companions biked on without her.  Nearly a year into this odyssey, while watching her son’s wedding video, she noticed the mother of the groom, limping up the aisle next to her husband.  “I am a medical woman in a medical family, but it took watching that video” to recognize that something way beyond grief was at work in her body.  In her next trip to her Internist, at her husband’s suggestion (a health care provider on a medical school faculty), she requested a brain scan.  Something truly startling emerged from those images.

A Degenerative Neurological Disorder

As if she were the clinician, and I were the patient, she carefully walked me through the anatomy and physiology that revealed itself in those scans.  Swollen brain ventricles indicated a build-up of cerebral spinal fluid (CSF).  The most logical diagnosis for this array of symptoms, and the physiology that revealed itself was a condition known as, “Normal Pressure Hydrocephalus (NPH).”  Like other degenerative neurological diseases the NPH patient will likely suffer eventual dementia, an inability to walk, and incontinence, until death brings eventual relief.  Indeed, during the subsequent year, Mara suffered all of these ailments and a list of nearly a dozen others.  “I was functioning,” she said, “but losing function.” 

A New Diagnosis and a Longshot

As 2019 wound down, Mara completed a forty page assessment tool that led to an interview with a neurologist in the NPH program at Barnes-Jewish Hospital.  This in turn, resulted in a referral to a neurosurgeon who ordered a four-and-a-half day round of rigorous inpatient diagnostic testing.  As a result of this workup, her diagnosis shifted from Normal Pressure Hydrocephalus, for which there are only procedures to slow its inevitable progression, to the extremely rare “Obstructive Hydrocephalus” (OH).  Unbelievably, Mara’s neurosurgeon was one of the few clinicians in the world with some experience in surgically repairing these types of obstructions.  In tones approaching childlike wonder, Mara described the endoscopic Roto-Rooter procedure that would allow CSF to drain from brain ventricles into natural brain reservoirs that allow the fluid to be absorbed and discarded. 

The diagnosis was unbelievably rare.  The proposed intervention was rarer still.  This made prognosis for recovery nearly impossible.  The medical team laid out a sobering set of potential outcomes.  The surgery could result in brain injury and more disability, that could possibly necessitate life in a skilled nursing facility.  Another possible outcome:  death.  A third potential was that the procedure could result in no impact at all.  The fourth, and final possibility represented Mara’s hope and that of her team (including her family):  some measure of progress in winning back at least parts of her life.    What was Mara’s decision?  With almost no hesitation, it was full steam ahead!

The Core of Mara’s Resilience Story

One solid cognitive strategy that some psychotherapists employ to take the power out of catastrophic ruminations is something I call the “Then What Strategy.”  The therapist asks the client to imagine the catastrophic outcome he or she is entertaining.  “If this horrible fear came to pass, then what would you do?”  If this technique succeeds as intended, the cognitive psychotherapist will have assisted her client in realizing the deep and abiding truth as portrayed in the Eagle’s 1972 song, Peaceful Easy Feeling.

I get a peaceful easy feeling,

And I know you won’t let me down,

Cause I’m already standing on the ground.

Written by Jack Tempchin and sung by Glen Frey

On the eve of surgery, Mara displayed an unimaginable degree of “ground”-ed-ness in the face of her own potential accelerated diminishment and death.  She initiated a conversation with her husband and sons.  She wanted to tell them in no uncertain terms that she was “at peace” with any of the outcomes that could occur including disability, including even death.  After I posed a couple of annoying clarifying questions, she assured me, “I wasn’t just saying that to make them feel better.  It was true!  That is how I felt.  I was at peace.”   

This pre-surgery summit was the part of her story that she briefly related to me a month ago, that caused me to request a thorough interview in the first place.  I remember thinking, “What could possibly test one’s resilience more than one’s own diminishment and death?”  I wanted to find out,  “Where does a person go to gain purchase on the kind of spiritual and psychological grounding that made that conversation with her family possible?” 

The great presidential scholar, Arthur Schlesinger, illustrated the simple formula at the root of towering leadership.  INHERENT GIFTS + A HUGE CRISIS =  TRANSCENDENT LEADERSHIP.  This week, we heard the “HUGE CRISIS” part of Mara’s equation (she called it her “Tumble Dry on High” experience).  In next week’s installment of Sunday Morning Café, we will return to Mara’s story to examine the predicates of that basic equation at the heart of her resilience, or “ground”-ed-ness, if you prefer. 

In the meantime, as a way to provide a tease to the next episode of her story, perhaps you could conduct a little resilience research of your own.  Find one of your BFF’s, and discuss a time when you felt “tumble dried” on the “high” setting.  In other words, when was a time of great challenge for you?  What kept you “ground”-ed, or helped you return to “on the ground?”

Since Lizzie, my youngest, was four-years-old, she has taken once-a-week violin classes at The Community Music School.  In preparation for her final concert this May, she selected the hardest song she has ever played.  I include it now with Mara’s story because this piece is very hard, but it is a thing of beauty, just like Mara’s story.  And just like that story, it is made more beautiful because it is probably impossible for her to do it perfectly!

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