From The Chair

June 2015

The Unfolding Journey of Grief Work

From the dog days of last summer through to the day the tulips bloomed fully in our yard, the professional and personal sides of my life blended together more than they typically do as I grappled with what would prove to be my father’s fatal illness. Over those months, my dad progressed from weight loss, to the incidental discovery of metastasic renal cell cancer, to pain, to no-longer-in-pain-but-too-weak-to-stand, to a slow steady decline culminating in (as we say in the biz) a peaceful death.

Grief work: That was my task and my journey starting from that evening in the ER when I stood in the doorway of his room looking at the physician talking on the phone with the radiologists, seeing his eyes go wide and then watching him looking down and shaking his head. Nothing good follows those signs of bad news. My work continued from then until I sat at the funeral parlor, gazing up as my three children stood in front of the casket, looking down at the laid out body of their grandfather. And now it will continue for some indeterminate time, stretching forward most likely in fits and bursts, with continuing bonds both light and dark, for the rest of my life.

Both privately and professionally, our response to death is built upon what we have learned from prior losses. When I was first starting out in pediatric palliative care, someone wise in the ways of grief, Geri Haines, sat me down and in a gentle way had me stretch out my “Loss Lines”, a genealogy of whom I had loved and lost from when I was a child until that day. For me, these loss lines started with the death of my grandmother (of whom I was very fond, but recall as an eight-year old being more confused at her funeral than sad), transitioning with the death of my Uncle Frank (who was gruff and almost scary, yet now a year older than when my grandmom died, I cried my eyes out realizing — and even more so, feeling — that I would never see him again). Then came a long pause in the sequence of loss within my immediate family, but with the deaths of peers and the members of other families, until when the year after I graduated from college my Aunt Mary died from pancreatic cancer. (My lingering anger over how she was treated and abandoned by her doctors fuel part of my passion for palliative care). And then, during my pediatric residency, came the death of my sister, Beth, after a two-year journey with acute myelogenous leukemia. I will never forget how my father, when we were driving from the airport where he had picked me up to go to the hospital where Beth was in the final stage of dying what thankfully was a peaceful death, said to me: “I remember crying when I learned she had been born with Down syndrome, and now here I am 27 years later crying because she is dying,” and then choking up.

Each loss recapitulates all the preceding losses. And since loss is always painful, we try in different ways to control and contain our sorrow. In the 1960s, when grief started to emerge out of the crepe-adorned closet into which Western culture had thrust it over the preceding century, pioneering leaders like Kubler-Ross performed a great service even as they created new confines of this ineffable shape-shifting experience of grief. The response to loss does evoke myriad responses, but grief is not tidy: there are no clearly unfolding stages. Certain feelings and thoughts rise and then submerge, only to make unexpected reappearances later, following no set script. These are deep and murky processes, ones that we can feel but perhaps never fully understand. And perhaps this is because what is going on — the loss of an attachment figure, the loss of an assumptive world — is going on in parts of our brains that do not seek to understand but only to perceive and react. The work of grief may be within sight but out of reach of our intellect. I am sure that woven through all my experiences with death are my “implicit memories” of grief, both anticipatory and bereaved. As opposed to the explicit memories that recall to mind specific images and words and events from the past, implicit memories are the subtler but perhaps more important recollections of how things felt, the memory and reliving of feelings in the body.

For me, the felt memory of grief is, on the one hand, more passive than active, a bobbing up and down in feelings that come unbidden in waves. The term “wake” describes well what happens after someone dies, and not just the gathering of people to honor, to remember, to support. After the death of a loved one, life is disrupted as a pattern of loss spreads outward, at first so turbulent and focused, then expanding to touch more of life’s expanse, from the obvious opportunities for sadness such as the upcoming Father’s Day, to the surprising triggers such as filling a bird feeder with seed. The loss strikes one of these occurrences and reflects off in unexpected directions, overlapping with other swelling feelings until nothing is left unaffected. On the other hand, grief work for me is also active, not only in the sense of “sense making” but also in the important work of feeling what I am feeling. Being aware and accepting of my bobbing up and down awash with feelings requires intentional effort. While our intellect may not be able to sufficiently understand or control grief, we can — with the support of others — be guided by our thinking minds to allow our feeling mind to do what it does in the face of loss.

And someday soon I will be sitting with a patient, parent,
sibling, grandparent, or colleague who is grieving, and all of this will be sitting there within me. I will likely feel sad for reasons I both do and do not understand, and I will try my best to be sad with them as we experience the unfolding journey of grief work.

Chris Feudtner, MD, PhD, MPH, FAAP

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