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Getting Past “Passed”

“I hear no one gets out alive.”

Thirty-five years ago, I shared an office in the Cannon House Office Building with another young lawyer, Jay Turnipseed. He had two young daughters; I had a two-year-old boy, with another on the way. Jay had been diagnosed with Stage IV Hodgkin’s Lymphoma which, at that time, was untreatable. Determined to carry on, Jay would use that phrase to rescue those searching for a direction or suitable words when confronted with his news or, worse, his obvious decline.  It was a grace of which I don’t think I’d have been capable—not then, anyway.

On February 19, my older sister Kathryn died.  She didn’t “pass;” “pass away;” “pass on;” meet her Maker;” “shuffle off this Mortal Coil;”or any of those other euphemisms we’ve invented to skirt an inconvenient truth:  our best efforts to the contrary, you’re born; you live; you die.

We were better prepared than most.  She’d been diagnosed a year earlier and given a six-month sentence by her pulmonologist.  It wasn’t the shock you might normally expect.  First off, she’d been sick, medicated, and operated on, in one way and another, since infancy and throughout our lives together.  “Medical anomaly’ is my middle name,” was her favorite way of summarizing her peculiar health profile.  We’d both had enough post-secondary exposure from the Sisters of Loretto and the Jesuits to the ironies of our mortal danse macabre that we’d given the situation more than passing thought before the last diagnosis.

Being a life scientist and teacher, and as definite and determined as an infantry battalion, she was explicit in her wishes about how to be cared for, disposed of, and remembered.  “I don’t want anyone seeing me after I become a pile of mushrooms,” she said.  Her resolve, cloaked though it was in velvety humor and charm, took her routinely beyond argument.  (Little brothers are for taking orders, after all.)  We had the assistance of the hospice professionals and volunteers from Sutter at Home, who managed her physical and our emotional pain with their skills, their “Let’s do this!” attitude, and their persistent kindnesses and words of comfort.  (Krista, Shannon, Erin, Norma, Barbara: no doubt you saved Medicare a lot of money, but our debt to you can never be repaid.)

Still.  Anybody can always use a little help, right?  K.’s pal Sharif Abdullah—by any reckoning, an interesting human—suggested we might want to take a look at Griefwalker, a 2009 documentary produced by the National Film Board of Canada.  We did.

My recommendation: If, at any point in your life, you think you might die, you should own a copy.

"Griefwalker," a film by Tim WilsonTo call Griefwalker a documentary doesn’t honor its beauty and complexity enough.  It’s a tale of two friends whose routinely intertwined lives are interrupted by a near-death experience.  Tim Wilson, the writer/filmmaker, and subject/”palliative caregiver” Stephen Jenkinson had known each other for two decades.  Jenkinson, with his masters’ degrees in theology (Harvard) and social work (University of Toronto) and purposeful adoption of the ritual and lifestyle of the Algonquin, had seemed to Wilson to be merely eccentric—until his own terminal diagnosis and, later, the birth of a fragile son compelled him to confront the reality of death in his own life.

In an early scene, Tim reminds Steve of something Steve said to him, at lunch on Tim’s way out of hospital, after surviving his own scare:

STEPHEN: “You don’t sound to me like a man who’s been given his life back.”

TIM: “I was shocked and pissed off by that for a long time.  How would it have gone differently if I’d known how close I was to dying then?”

STEPHEN:  “The crucible for making human beings is death.  Every culture worth a damn knows that.  It’s not success.  It’s not growth.  It’s not happiness.  It’s death.  That’s the cradle of your love of life: the fact that it ends.”

When not trapping beaver, repairing canoes, or playing full-dress hockey ferociously alongside his son, Jenkinson teaches end-of-life caregivers and counsels terminal patients to abandon their inculcated denial and embrace death.  His thesis is that, in our continental cultures, we are educated to believe that death is a punishment, a consequence of our first people’s disobedience.  Because they lost the Garden of Eden, each and all of us are homeless in this world; we don’t belong here or anywhere in this place.  “You’re not home, and you’re gonna die.” He observes:

“It’s not human to fear death…[In our] “North American culture, we are death-phobic.  Our own death is a rumor; everyone does the job for us.”

Tim asks him to describe his role as the “Angel of Death” to “the Death Trade.”  Stephen reflects, briefly, and says:

“To be a faithful witness to how wretchedly difficult it is, in our time and place, to do something that is otherwise God-given.  We deserve better than we get.  Of all the sad things I see, the one thing I see—the one that’s least necessary, but a given part of the fabric of the way it is—is the terror” [seen in a terminal patient’s eyes.  It is] “…a wretched anxiety, a toxic, if not overwhelming fearfulness.  What they’re afraid of is what we’re going to do with them after they die.  No matter what you think you believe…you believe something suddenly, and it’s big; this is what fills them with dread.  You’d think there’d be some comfort in having this closet suspicion, at least, that there’s something that endures at the moment of death and beyond, but it actually sorrows them tremendously.  That’s the peculiar, dominant North American irony; the other half of it is, if I endure after my death, I do not believe that you, who say you love me, are going to conduct yourself as if there is something of me that endures after my death.  Or, in my language: I don’t think you’re going to carry me.”

His prescription for the terror?  Defeat it by becoming intimate with your own finality and its meaning to you and those you leave behind.  He sits with a woman whose greatest fear is the survival of her “blended” family, and describes to her what her “job” will be in the days remaining:

“What you have to learn is how to love somebody as if it’s not going to last, because it’s not.  The way we’re trained to love—whether it’s love of a person, or love of self, or love of cause—is to love what’s lovable about them.  You don’t love anybody until you love their end.  You don’t love being married until you’ve loved the end of the marriage, because the marriage includes its end.  Of course it does—just as truly as being born includes not breathing anymore, sometime—and that’s what you have to love, not accept.  ‘Accept’ is too neutral.  You have to love it; that’s really active.  You have to say ‘yes’ to that.”

In another case, Stephen listens to a classically Canadian couple—upright, ruddy, and reserved.  She manages her awful truth by refusing to be reminded of it, blind to the fact that its omnipresence is destroying her husband and their relationship by degrees.  Gently, he asks them: “Do you know each other?  Have you met?”  Tears and admissions follow and, throughout, Tim revisits them, recording her growth and the recovery of their intimacy and purpose.  Stephen sums up that process this way:

“It comes from a recognition of the way life is, that it must be, that it requires death to be able to continue, because death feeds everything that lives.  The recognition that that’s the case and that it includes—not you, that’s the easy part to see—but the people that you love and the things that you don’t want to end.  That’s grief, and it’s not personal.  The key, the real skill to being grateful, is not to be grateful for the stuff that benefits you; that’s easy.  What about being grateful for the stuff that doesn’t benefit you the least, but you’re grateful for because it’s in the world?  Now you’re getting somewhere.  Now you’re seeing the big story.  Now, you’re willing for life to be bigger than your life span, or your children’s life span.”

Jenkinson’s elegant definition of grief:

“Grief is not a feeling.  Grief’s not how you feel; it’s what you do. Grief is a skill, and the twin of grief, as a skill of life, is the skill of being able to praise, or love, life; which means that wherever you find one authentically done, the other is very close at hand.  Grief and the praise of life, side by side—the honored guests at the head table.  And they’re toasting you, clinking their glasses and toasting the living.  ‘So, here’s to you; until the time comes when we come to get you, live well.’”

My sister had already found this wisdom, given her lifelong confrontation with her own physical infirmities.  She lived beyond well—not just by defeating her physique daily, but by touching thousands of others as a caring and wholly engaged teacher.  I acquired that insight from her, always in her presence and on those occasions when she forced me to really hear her words.  Her terror was that she would fail our other six, geographically dispersed siblings and their families, in the same way as the woman described above.  (I should say here that I occupy a unique position within our tribe.  Kathryn was nine years older than I, so I didn’t experience with her the intimacies of growing up together that my oldest sister and two older brothers did.  I was 18 and functionally out of the house when our Dad died of cancer, so I wasn’t involved in her efforts to provide support and nurturing to the three remaining younger ones—made necessary by my Mother’s taking up residence in the “anger” phase of grief for her remaining 31 years.  We had the advantage of growing close as adults, essentially on neutral territory.)  By working together, we mostly succeeded, by placing her life and her end in front of them and urging them to remember the one over the other.

To conclude the metaphor about the banquet, with grief and love of life at the head table, Steve Jenkinson concludes with this:

“The storytelling is the feast.”

From last July until she no longer had the energy, dear Barbara gave my sister the moral and clerical support she needed to remember her own life in words, from earliest memories through her first, “accidental” job teaching science in Denver.  After that, Kathryn taught in Delaware for 31 years and retired to Sacramento for her last 11 years; we planned two luncheon feasts—complete with strict lesson plans—so those she loved and engaged could come together.  We did, told our various stories of her, clinked our glasses, and concluded that she had, indeed, “lived well.”  We recorded both events.  The life of Kathryn Marie Hart Hopkins—who she was, what she became, and what she stood for—will endure, beyond our lives and the lives of our children.

To Sharif:  Thanks for the tip.  To Tim and Stephen:  Thanks for the boost.

18 comments

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  1. Krista F.

    This was very moving and it struck many chords for me. Thanks so much for sharing your experience and your story.

    1. E.G. Fabricant

      Thanks for your kind words, Krista. I hope you’ll explore the lighter side of my work, too!

  2. Elizabeth Varadan

    This was a deeply important thing to share. I agree, our culture is often in denial about death and dying, and none of us know how bravely we will face the ultimate moment. Your sister sounds like a remarkable person. She certainly lives on through your wonderful testimony.

    1. E.G. Fabricant

      Given Jenkinson’s remarks about the “terror” and “sadness” he sees in the dying–fed by their fear that their lives and memory will not endure their deaths–made me like our words of avoidance, especially “passed away,” even less!

  3. Carolyn Blair Brandes

    What a moving tribute to your sister. How very important it is to do share all the elements of life. Another book that deals with death is Chasing Daylight by Eugene o’kelly. He was my friends’ dad and president of Kmpg. Very factual about saying good-by. Thanks for sharing.

    1. E.G. Fabricant

      Thanks, Carolyn–and agreed. Hope you’re well and enjoying life.

  4. Tom Hart

    Thanks Tim. I especially appreciate how well you have encapsulated the special Hart Family bond was strengthened by Kathryn’s courage and humor during the “homerun” of her final journey. She has left an unique legacy that has enriched each of us.

    Love,

    Tom

    1. E.G. Fabricant

      Thanks for reading and your very nice comments, brother!

  5. Bernie Jestrabek-Hart

    Thank you. Kathryn would be proud of what you wrote. She was a wonderful human being and I a better person for having known her. What a wonderful legacy she has left by her example.

    1. E.G. Fabricant

      She was, indeed–and her life lives with us!

  6. Barbara T

    Grand and yet directly eloquent. You and Kathryn…so alike. The time I had with her grows more precious to me every day. Life well lived. Death well. I missed the first many decades. Wish I could have traveled longer. Thank you for your gift.

    1. E.G. Fabricant

      Regret nothing, Barbara. You brought great comfort to us both.

  7. Carolyn

    Tim,

    She is all you have said and more. She enriched all of our lives in so many ways.
    Thanks for all you words. Staring into the Sun is another book that looks at life and death. cc

    1. E.G. Fabricant

      Truly, it was my pleasure–and thank you again for being her lifelong friend, through thick, thin (and broccoli). I’ll look it up.

  8. Robyn

    Truthful and moving. If only we could start “the conversation about death” early in life, to avoid the terror. I wonder if the terror is more about fear of suffering than the aftermath of our lives?

    1. E.G. Fabricant

      Robyn, Jenkinson’s theory, based on his own observations, is that the terror comes from doubting–afterlife or not–whether those you leave behind will live as though your life mattered to them. I think it provided Kathryn great comfort to actively plan to assemble her family and friends to remember her and to tell her own story to Barbara at the same time; the planning and execution helped me to focus on how she’d lived, not that she wasn’t going to soon. As Jenkinson says: “The storytelling is the feast.”

  9. Rosemary Walker

    This is a lovely story. I am a volunteer with Victoria Hospice in Victoria, BC, Canada. We have a program called Life Stories. Trained volunteers go onto the Hospice unit or into a patient’s home and record up to 5 hours of their life story, or ethical will, or messages or whatever the patient wants. We consider the CDs produced at the end containing their stories the “feast” I couldn’t begin to tell you the wonderful transformations we witness during the storytelling.
    Thank you for telling your family’s story.

    1. E.G. Fabricant

      Rosemary – Thank you for your kind words, for what you do, and for reinforcing Stephen’s central message in “Griefwalker:” “The stories are the feast.” Our hospice program, with Sutter Health in Sacramento, did not have a formalized program like yours but the volunteer assigned to my sister agreed to help us put her words together. The result was a document that could be shared with anyone she knew or influenced. We also videotaped the two memorials we organized at her request–another talisman for her that will assure she’s not forgotten. Every person faced his or her own end deserves no less. — EGF

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