Observations about health, mortality, and language

Editor’s Note: Ever since Karen attended the very first PDX Death Café in 2013, I’ve been privileged to be on the receiving end of her ways of being “troubled aloud,” a practice she’s studied with Stephen Jenkinson since enrolling in the very first class of his Orphan Wisdom School. After a mastectomy occasioned by her fourth diagnosis of breast cancer in ten years, Karen wrote to a small group of women who have joined her in pondering how we come to illness, health, and dying. Even – and perhaps, especially – amidst the flurry of “death positivity” in this cultural moment in North America, I find Karen’s take on these matters rare. With her permission, I share excerpts of her recent writings here.

Yesterday was my one-week post-op check-up.

I left the visit without drains, and with permission to stop taking antibiotics, but also with the pathology report that included no cancer in my lymph nodes and no surprises or changes in the cancers that had been biopsied two months ago on diagnosis.

After the appointment, my partner and I walked out of the medical building and into the late afternoon sunshine. We stopped to admire the bees on the fragrant lavender plants and made our way to the farmer’s market where we splurged by buying morel mushrooms and two bundles of tiny asparagus shoots.

I smiled a lot at everyone on our walk along the food booths, reveling in my ability to be alive to do so. But also and quite consciously I find myself struggling with language as I watch my knee jerk response in labeling the news I’ve received as “good”.

On my mind is my longtime friend’s husband who has just been diagnosed with a rare cancer that offers him no options for treatment. He told her that as much as he’s loved raising his son and having her as his wife, he also knows he’s in the middle of the biggest thing he’s ever done. Their love is heightened, and I know well the sweet spot they have the possibility to live in the midst of.

I’ve wondered how it would be if we sought for our lives to be full rather than long, and our endings to be neither “good news” nor “bad”?

I’m undone by it all this morning. I’ve wondered these last hours about our inherited cultural predisposition to binary oppositional thinking. Does it position us in a place that doesn’t allow us to be where we are, by forcing us to choose whether news we’ve received is “good” or “bad”? What if it’s more complex than that and the complexity is revealed or shrouded depending on the language we choose?

It occurs to me that labeling news “good” and “bad” serves to betray our cultural prejudice against what the “bad” news brings us closer to. I further wonder if what we’ve inherited culturally as our definition of “bad news” might more properly be seen as “good” as it arrives with the possibility of tethering us to that sweet spot where life rises in a way it’s wont to do in the presence of endings. And what we call “good news” might bring with it our ability to forget that, rightly seen, it never really was news at all that we will die. 

As my approach to something more, I’m doing my best to stay out of the language of “good” and “bad” and to speak my way toward the field beyond both. I imagine that field to be the rest of the story, and I recognize our cultural forgetting is thorough.  

It seems proper to remain faithful to my garden – knowing that soil, made of all manner of things that have “gone to ground,” is as important as the greenery growing because of it.  Gardening makes visible that death is the miracle that life grows out of and none of us is left out of the miraculous.

For now, life is pretty sweet. I think of each of you and what the day might bring your way and I go about my morning with a sense of life thrumming through me as I tend to the ordinary.

On attachment: “I’m not quite ready for that to not be so.”

Karen’s email elicited a response that included a wondering about the Buddhist teaching of Samsara and the reluctance to let go of attachment to what we love. Karen’s reply:

I don’t know enough about Buddhism to comment on Samsara, but I would say I’m admittedly a full-on practitioner of attachment and have no problem understanding the reluctance to letting go of deep relationships to people, places, and chocolate!

The roux of my days finds me attached to being alive, reluctant to die and willing to know there’s a bigger story of which we’re a merciful and integral part.

Last night my partner cooked our morel, asparagus and Alaskan salmon dinner and while we waited for the salmon to bake, we danced together in the kitchen to beautiful music, holding each other close and grateful to be doing so. In the midst of all of this we were also remembering two of our close friends and the anniversaries of the recent deaths of their husbands. We’re both acutely aware of endings. Our week has also included garden time, grandchildren time and some coffee breaks in between. Is our attachment to these heightened, but ordinary moments – with their capacity to hold endings close – to be considered a misunderstanding? Or is this also where a form of enlightenment lives?

In these times, when “more time” [after a diagnosis] is mostly considered inevitable [given what’s possible with medical technology], is the news that has the capacity to deliver us to these fully alive moments to be limited to the consideration of only “good” or “bad”?  What if living in that sweet spot made possible by endings didn’t require the delivery of “news” at all?

Yes, it’s good to be told what I was told at my appointment. And yes, I’m grateful there are those in my life that will tell me so. I’m also acutely aware of living in a culture that does what ours does to the understanding of death, illness, and endings.  So many things can be true and all at the same time.  

All willing, we’ll get a chance to die (and not be killed by an accident or something like a heart attack), and my want for all of us is for that time to be seen as what undoes us, what breaks our hearts and, in so doing, might serve to make us Human.  My want is that we might come to know that for now we’re here, and someday, it will be one of us preparing to join that long line of loved ones and the trek they’ve made on that hard road. When that time comes I want for us to see ourselves to be on the receiving end of a great love that includes us in a story so much bigger than our own.  

What if that great love is simply the story that doesn’t leave us out? And what if our difficulty with that story, isn’t the story itself, but instead the language in which the story mostly gets told? 

With that in mind my blessing is that our goodbyes be sweet and sorrowful and messy and reluctant. May our way of going be regal and full of lament and curiosity and mystery and a bit of well-seasoned apprehension. May it be so that our going is every bit as much of a beautiful and grand moment in the rhythm of our lives – and the lives of our loved ones – as our arrival on the scene was. And weirdly, may it be every bit as ordinary.

What if we were simply able to say to each other: I’m so grateful you’re here, that you woke up again. And: I’m not quite ready for that to not be so. Or perhaps, I’m not ready to feed you from a spirit plate and not the plates that live in our cupboard. I’m just not quite ready….

I look forward to our next meal together as we share our laughter and laments.

Faithfully yours and undone by the beauty of it all,

Karen