In the Gap

Tending to Endings (fifty-nine)

In preparation for classes at United Theological Seminary (UTS) next week, I received a list of questions to ponder before orientation. One read, “If you came with a warning label, what would it be?”

Which brought to mind a memory from my grade school years of standing on the slippery tiles at the base of the high dive at Kopp Pool in Des Plaines, Illinois. My friend Amy Ayers is next to me and she says with a sigh, “Laura, do you always have to be so deep? Can’t we just have fun?”

I don’t know what I said to garner that response, but given my intense fears about high dives and what others thought of me, my guess is that I was trying to make a philosophical case for why getting out of line for the three-meter board was actually the brave thing to do.

Even at age ten I warranted a label: Ill-equipped for small talk.

My making it to middle-aged as a relatively happy person has involved some combination of acceptance and balance and having good friends who can make me laugh. And when I think of that day on the pool deck in the context of my current work–writing Tending to Endings and volunteering for hospice and beginning a chaplaincy program–I do laugh.

Not everyone wants to address the meaning of life in every conversation, but I seem to have found places where it is the natural thing to do!

This month I return to College of Western Idaho to teach in the Social Studies Department, I start graduate school for the first time since the 1980s, and I begin hospice visits as a volunteer at St. Luke’s Hospice. For someone who writes about endings, I’m immersed in a whole lot of beginnings!

In preparing for this new work, I’ve come across so many things I want to share here. I’ll start with three finds that have been particularly helpful.

This American Life: In Defense of Ignorance

As I’ve prepared my CWI course, “Psychosocial Aspects of Death and Dying,” a friend reminded me of Lulu Wang’s story which first ran on This American Life in an episode called What You Don’t Know (30 min).

Wang is troubled by her family’s elaborate plan to keep a cancer diagnosis secret from her grandmother (the person with the cancer). Family members fake medical test results and quickly plan a wedding so that family members have a reason to travel to China to see Nainai (Wang’s name for her grandma).

In this short passage Wang explains how her aunt (named Little Nainai) justifies the secrecy:

Little Nainai told the doctor that Nainai is too old, that she couldn’t handle a blow like this. It’s not just that Little Nainai didn’t want to upset her sister with the news of her death. She actually believed that not telling her was a way to prolong her life. Knowing Nainai’s personality, Little Nainai worried that her sister would get overwhelmed with fear and depression. She’d stop eating. She’d stop sleeping. She’d lose interest in life. The Chinese believe that mental and emotional health are completely linked to physical health.

The story reminds me how many factors influence how we think and feel and act about death: culture and generation and geography and personality and particular circumstances. And the part that resonated most with me was how even values that I considered foundational and clear looked different amidst the particulars of my mother’s illness.

If you asked me whether you should tell someone of their own terminal diagnosis I would say of course!

But when my mom was given a cancer diagnosis while she was also in the grips of Alzheimer’s, things didn’t feel as clear. Mom was in the room when the doctor explained that her cancer was not curable, so she heard it. But by the time we made it to the parking garage of the hospital, the information was foggy and by the next day, she had forgotten it completely. And it wasn’t just memory, but also her ability to process and cope with the information of her condition–both the Alzheimer’s and the cancer–was different on different days.

Before this I knew honesty and directness weren’t always easy, but now I didn’t even know if they were the right path. Do I keep reintroducing painful information when Mom would have to go through the pain of processing it again, and again, and again? What about when she asks why she is hurting? Do I tell her then? What about when she becomes more agitated after I tell her? Do I do something different next time? How important is it at any given moment that my mom understands she is nearing the end of her life?

I was never fully able to reconcile those questions in a way that was satisfying to me. Mostly, I bumbled my way through, doing the best I could to give my mom the information she seemed to want to know when she asked.

Towards the end, I sensed that at some level below the Alzheimer’s, my mom knew and made peace with her own leaving. But this was not a knowing that had anything to do with talking it through. Instead I felt it in the changed cadence of her breath, her relaxed brow, the way the corners of her mouth turned toward laughter in her particular Jane way. It wasn’t because I said the right thing, but it happened, and for that I am grateful.

Call to Care

I’m reading The Call to Care: Essays by Unitarian Universalist Chaplains edited by Rev. Karen Hutt (who is also our Vice President of Formation and Vocation at UTS!), and I could easily pull quotes from any of the essays, which tend to take on the very questions I have about the role of chaplaincy. But this passage from Nathan Mesnikoff’s “Lost (and found) in Translation,” has stayed with me:

Philosophers and theologians have debated for ages what knowledge we can have of the world, let alone for the complexities of another’s heart and mind. There is always a gap. Indeed, one of the first things we are taught [as chaplains] is never to say, “I know how you feel.” I don’t know how you feel, or how you understand death or God. I don’t know what this particular moment of suffering, which you happen to be present for, means to you in the context of your life and faith.

So I reach out across that gap and do three main things. First I bear witness through unflinching presence. I don’t turn away from your suffering, remorse, guilt, or anger. Second, I ask what this experience means to you. Where does this episode fit in the narrative of your life? Third, I try to help you connect with sources of strength and hope, whatever they may be: organized religion, disorganized religion, hiking, schnauzers, grandkids, whatever. Many people have no one who can effectively do these three things, these acts of human love and compassion.

One of the things I loved most about this quote is it named things I can practice in my relationships today that don’t require any special degree or certificate. They require a deep breath, maybe, a little courage, a willingness to be present with another in the face of uncertainty and pain and the things we cannot fix. Given how much is going on in the world and in the lives those I know, it’s good to have a place to start.

Heart & Soul: St. Luke’s Home Care and Hospice

Writing has long been my creative outlet, but so often words fall short. The above article in Heart & Soul: A Newsletter for St. Luke’s Home Care and Hospice Volunteers, reminds me there are other options.

After years of service in the downtown St. Luke’s hospital, Barbara Beck began sewing memory bears for hospice patients and their families in 2005. Since then, she has sewed over 1000 bears. Suddenly, I wish I knew how to sew! What are words when you could have a bear made from the soft garments worn by loved ones? 

Many hospice providers have programming around the arts. Volunteers sing in traveling choral groups. High school students interview elders about their favorite music and bring iPods with special playlists. People gather to create prayer shawls or quilts or memory boxes. And of course there is a long tradition of friends and family bringing comfort food to the porch. 

I currently am not practiced in any art form other than writing, but I would love to have an alternative for those times when there truly are no words. I don’t think I have enough time left on earth to master the sewing skills necessary for bear making, but it is a goal of mine in the next year to explore some other small (imperfect) offering I could create that doesn’t rely on sentences. I’ll let you know how it goes!

It means a lot to me that so many of you keep returning here! Please feel free leave comments or add your own resource suggestions below. You can also reach me at laura@laurastavoe.com. If you would like to subscribe leave your name and email below, and you will receive Tending to Endings on the first Friday of every month.

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