“I Shall Die, But That Is All I Shall Do for Death” (Part One)
- Dr. Tom Wagner
- 59 minutes ago
- 9 min read
(Edna St. Vincent Millay, 1934)
What allows a person to face the possibility of disability or death and still say, “I am at peace”? Keep reading for a reflection on mortality, courage, acceptance, spiritual grounding, and what resilience looks like when life becomes most fragile.
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“I Shall Die, But That Is All I Shall Do for Death” (Part One)
The following article represents a return to an interview conducted several years ago. Its focus may be the most difficult topic of all, when it comes to resilience research: the facing of one’s own diminishment and death. The aim of the current piece is not an Edgar Allan Poe fascination with dying, but more of a curiosity about what leads to greater happiness and resilience as one approaches what Elisabeth Kübler-Ross called, “The final stage of growth.”
I’ve always wondered how I’ll face my own death. Despite the fact that I’m definitely on the back end of middle-aged, somehow, death still feels unreal to me. Resilience and happiness researchers are of one mind. If you want deep happiness, ground yourself in a whole-hearted commitment to what is real, even if what’s real is hard, even if what’s real is unwanted. Well, death is pretty real, and it’s pretty hard, and pretty unwanted.
The spiritual masters of every tradition agree with this whole-hearted commitment to reality, especially when it comes to accepting the fleeting nature of life. That’s why you’ll find spiritual practices in every tradition, for the contemplation of the inevitability of death, and not just generic death, but one’s own death.
For example, there’s that famous painting by Caravaggio that shows Saint Francis with a skull in his hand. That portrait envisioned the twelfth-century monk seeking the same kind of revelation that Buddhists have always sought in their meditative practice of Marana sati (the meditation on one’s own death). Those who absorb the wisdom of these practices describe a greater realism about their lives. This leads to a kind of intentionality and an appreciation of the days that still remain in this life. For less brave, less enlightened souls, which if we’re honest, probably includes most of us, our Marana sati meditation only arrives with serious illness and diminishment. Until then, most of us see death as a theoretical thing that happens to others who are either unlucky, undisciplined, or really old.
Introducing Mary
For my friend, Mary, the theoretical suddenly took flesh in her own body. I bumped into her a few years ago at a retreat center. The perfunctory, “How’ve you been,” led to the weighty news that she’d been on a two-year journey with a rare degenerative neurological disorder. That diagnosis carried with it the prediction of the loss of most of her capabilities before she would eventually lose her life. During that brief little encounter, she gave me a thumbnail sketch of all this. Within that bare-bones outline of the experience, she recollected for me a crushingly beautiful exchange with her husband and sons. It was that exchange that made me want to catch up with her, after the retreat, so that I could sit down with her for a full interview.
As you might recall, I have an abiding interest in studying what makes people resilient. I wanted to know what Mary’s forced experience of Marana sati might reveal about resilience in the face of death. In other words, it seemed like Mary was able to hold onto her peace and equanimity in the midst of the worst possible circumstance. I wanted to know, “How did she do that?”
The Interview
Mary welcomed me into her comfortable middle-class home. She and her husband had shared it for twenty-six of their forty-four years of marriage. Together, they raised two boys, now both married, 42 and 39 years of age, respectively. Mary was proud to introduce me to the pictures of her current grandkids—five and three-year-olds at the time. She explained that she and her husband, Pat, were waiting on the birth of her third grandkid, “any minute now.”
A kind of simple elegance in art and architecture graced the open floor plan, which glistened with morning light, prefiguring the quality of the interview Mary would give me. The well-ordered characteristic of every room mirrored the way that she would tell her story. I suspected that this was a revelatory thin slice of how 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.
Mary’s a seasoned physical therapist. She knows how to relay medical information. That must be why she didn’t waste any time. She got right down to the business of relating complex anatomy, physiology, and pathology in terms a layperson, like me, could easily grasp. On the other side of all of that medical explaining, 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 altogether sure that I wasn’t just suffering grief from my mom’s long illness and death.” Two years earlier, her 89-year-old mom finally died, after a series of fractures, health complications, and hospice too. Mary served as her mom’s medical power of attorney, as well as her caregiver and companion. The eventual death created space for Mary 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, that is essential if you want to deeply understand Mary’s story, involved a physical therapist who practiced what she preached all down the line. For decades, yoga kept her strong and balanced. Running kept her fit. For the ten years before her illness, she took up the hobby of competitive sprint triathlons (½ mile swim, 13-mile bike ride, and a 5K run). Gradually, she began to notice odd things, like a lack of balance in yoga classes. A precipitous loss of ten pounds caught her diagnostic attention. Still, she figured that, “This could all just be me catching up with my grief.” After a thorough physical exam, with blood work coming back negative, it appeared that her hypothesis was valid. All signs seemed to indicate that a round of grief therapy was in order.
The problem was, despite grief counseling, the symptoms that had accumulated were growing. Soon she noticed that during her customary runs, her “gait felt funny.” Again and again, 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 have to take a rest while her biking companions moved on without her.
Nearly a year into this odyssey, while watching her son’s wedding video, she noticed herself limping up the aisle next to her husband. “I’m a medical woman in a medical family, but it took me watching that video to recognize that something way beyond grief was at work in my body.” In her next trip to her Internist, at her husband’s suggestion (he was on faculty at a local medical school), she requested a brain scan. Something truly startling emerged from those images.
A Degenerative Neurological Disorder
What came next in our interview was a thorough anatomy and physiology lesson. Her scan revealed swollen brain ventricles, indicating a build-up of cerebrospinal fluid (CSF). The most logical diagnosis for this array of symptoms was a thing called “normal pressure hydrocephalus," or 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. Just imagine receiving this news! As a matter of fact, during the subsequent year, Mary suffered all of these ailments and a list of nearly a dozen others. “I wasn’t really functioning,” she said, “I was losing function.”
A New Diagnosis and a Long Shot
As the year after that diagnosis wound down, on a hunch, Mary’s medical team had her complete a forty-page assessment tool. This led to an interview with a neurologist in the NPH program in St. Louis’ Barnes-Jewish Hospital at Washington University. This, in turn, resulted in a referral to a neurosurgeon who ordered a four-and-a-half-day… round of 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, Mary’s neurosurgeon was one of the few clinicians in the world with some experience in surgically repairing these kinds of obstructions.
At this stage of the interview, Mary’s tone shifted into a kind of childlike wonder. She described the endoscopic, Roto-Rooter-like tool that would allow cerebrospinal fluid (CSF) to drain from her stopped-up brain ventricles to be absorbed and discarded through the normal pathways that the brain absorbs and discards these fluids.
The diagnosis was unbelievably rare. The intervention was rarer still. This made the prognosis for recovery nearly impossible. The medical team laid out a sobering set of potential outcomes. One outcome: the surgery could result in severe brain injury, resulting in more disability. She was told that this possibly could necessitate living the rest of her life in a skilled nursing facility. Another possible outcome? Death. A third potential outcome? The surgery wouldn’t do her any harm, but it wouldn’t do her any good either. The fourth, and final possibility represented Mary’s hope and the hope of her team. The goal of the surgery was that she’d experience some measure of progress in winning back at least parts of her life. What was Mary’s decision? What was her family’s decision? With almost no hesitation, it was “full steam ahead!”
The Core of Mary’s Resilience Story
One solid cognitive strategy that some psychotherapists employ for anxious ruminations is something I call the “Then What Strategy.” It involves asking the client to imagine the catastrophic outcome on which he or she is perseverating. “If this horrible fear were to come to pass, then what would you do?” Usually, that question must be asked multiple times until the answer lands in a grounded, realistic place. It usually amounts to a pretty realistic worst-case scenario plan that brings some measure of relief. 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 Eagles’ 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.
On the eve of surgery, Mary displayed an unimaginable degree of “ground”-ed-ness in the face of her own potential accelerated diminishment and death. That’s when she initiated a conversation with her husband and sons. She wanted to tell them, “that in no uncertain terms” that she “was at peace with any, and all 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’s how I felt. I was at peace.”
This pre-surgery summit was the part of her story that she briefly related to me at the retreat center a month before this interview. That’s what caused me to request the interview in the first place. I remembered thinking some version of this question: “What could possibly test one’s resilience more than one’s own diminishment and death?” The resilience researcher in me 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. While listening to Mary, I was thinking that her remarkably high Resilience Quotient (RQ) follows the same formula of “Inherent Gifts,” + “A Huge Crisis.” This week’s article has spelled out the “Huge Crisis” part of the equation. In next week’s installment, we’ll return to Mary’s story to examine the “Inherent Gifts” in Mary that represent the resilience resources that allowed for such a high degree of ground-ed-ness in the midst of an unimaginably huge challenge.
Dialogue and Discussion Questions:
Longtime SMC readers know that “the Dialogue” section of this article is set aside for a good conversation over a cup of coffee—with a friend, with a group, or just with yourself! As always, feel free to share your reaction or reflection in the “Comments” section below.
In the meantime... as a way to provide a tease to the next episode of her story, maybe you could conduct a little resilience research of your own. Find one of your BFFs, and discuss a time when you faced your biggest challenge. What was the hardest part of it for you? What kept you “ground”-ed, or helped you return to ground?
What has been your experience of illness in someone you love (or yourself)?
What has been your experience of death in someone you love? Do you know of anyone who you consider a role model in how they faced their own death?
Please share with the SMC community your thoughts and/or reflections in the comments below.