End of Life 2/3

Steve Pantilat, M.D. was the keynote speaker for the conference entitled Soul Work on Living and Dying that friends and I attended a few weeks ago.  Dr. Pantilat is a renowned expert on palliative care — care which he describes as “focused on improving the quality of life for people with serious medical illness.”

I’m going to offer a few highlights of his presentation (any errors are mine, straight from my notes), and suggest that you read his book, Life After the Diagnosis.

life after cover

One: We tend to think that we must choose between quality and quantity of life: we must choose either every treatment offered us to prolong life, or refuse treatment and die. This is a false and damaging dichotomy, as much care is available to make life in the face of illness more palatable — and often longer.  Dr. Pantilat advocates for everyone receiving palliative care from a team of caregivers within six weeks of a diagnosis of metastatic cancer.

Two: A terrible question: “Would you like us to do everything possible?”  Of course; who is going to sat “no” to  question like that?  I have been with both parishoners and family when that question has been asked, and it has been very difficult to walk the conversation back with what is always my next question: “Could you please explain the likely consequences of a ‘yes’ answer?”

A good question: “How are you hoping we might help?”  People may have very specific goals related to pain management, surviving until a family event takes place, travel plans, where they want to be when they die — but an open-ended question is needed for those hopes to surface.  My own commentary: People are often too intimidated by the presence of a physician at a hospital beside, or too frightened by the death they have not discussed with anyone, to say, “I know I’m going to die soon, so I think I’ll skip the clinical trial, and go home to be with my family instead.”  We have to ask, not assume, what someone’s priorities are.

Three: People are fearful that talking about these issues will destroy hope.  In fact, talking about the questions increases hope.  Other good questions include, “What are you hoping for in your future?” “What worries you most about what lies ahead?”

Four: A most unfortunate statement: “There’s nothing more we can do.”  In fact, there is always something that we can do in terms of helping someone address their concerns, companioning them, and alleviating their feelings of abandonment.

Five: It’s a myth that the goal is to have a “good death.” I would take issue with his statement that “grief is not mitigated by age and a ‘good death,” but his overall point is a good one:  The goal is to live a good life.

Next post: Another of our speakers.

Holy Saturday: The Day After and the Day Before

It was the summer after my senior year of high school, and I was living with my maternal grandmother and her husband down in Cincinnati, so that I could work in a nearby motel.  There was little in the way of summer jobs in my small hometown an hour to the north.  Early Saturday morning, wearing my white maid’s uniform and sneakers, waist-length hair pulled back into a ponytail, sitting at the formica table in the kitchen, I eat my cereal. I am basking in the pleasure of having the house to myself for the week-end, while D&K spend time at his cabin in Kentucky. 

When I answer the phone my father is on the other end.  My stepmother, on vacation at Chautauqua with her daughter and grandson – the husbands to go up the next week-end – has somehow died in the night.  Late forties, healthy, excited for weeks about the anticipated time with loved ones in a favorite place.  Dead.

My uncle arrives a few minutes later to give me a ride to work.  I have changed into jeans, and tell him that he needs to drive me home instead.  We are silent, silent the entire way.  I see a tear run down his cheek, and I am surprised, but then I realize that he is remembering a similar drive ten years previous, when my mother, who was his sister, had been killed in a car accident, along with my baby brother.

. . .

At home, sitting in the kitchen.  A few people, family and neighbors, are milling about, making phone calls, making coffee, making lists.  The air is leaden, with a sense of doom being replayed.  I am not quite eighteen, and I watch them in wonder.  Each seems to have a role to play, and each seems to know his or her part.  It occurs to me that they have all done this before, ten years ago, and they know how to do it.   My role is to watch and learn, so that I, too, will know what to do someday.

. . .

We are crammed onto the back porch, which is really little more than a square brick entryway, crouched and sitting and standing, we six kids, who have seldom all been in the same place at the same time since our parents married.  July afternoon, warm, sunny.  Death has finally brought us together. My youngest stepbrother, almost thirteen, had found his mother.  He describes the scene, again.  My stepsister, 22 and a fairly new mother, says, “It’s so weird.  It’s so weird.  One minute, someone is alive, and the next, she isn’t. “  Later, she and I will return to the Chautauqua cottage and circle it like stealth reconnaissance agents, trying to reconstruct the events of that July night.

She looks at my brother and I as we sit on the porch, legs dangling over the grass.  “You already knew about this,” she says.  I always remember her tone as one of accusation, although I am sure she did not intend it that way.  But it was true.  We did know.  We had known for most of our lives.  One minute, someone is alive, and the next, not.

Holy Saturdays.  Bitter Saturdays. They happen to us all.  As more than one friend has noted this year, the anguish is not erased in three days.  And once you know that things are one way one minute and another the next, you cannot unknow it. 

The Judi and Robin Excellent Adventure ~ 4

Eclipse Day!

Judi was actually up until about 5:00 am working.  When I arose a couple of hours later, she was sound asleep ~ in our Murphy bed!  She said that she’d always wanted to sleep in one so . .  dream come true.

I headed out for a beautiful morning beach walk.  The St. Lawrence River has widened to the point where the northern shore is invisible.  Birds: black-backed gulls, cormorants, and gannets in the distance.  Crab breakfast for gulls.  The pink flowers we would see everywhere.  I made a cairn for Josh.

q matane beachQ matane crabQ matane flowersQ matane cairnQ Matane river

I felt fine until we began loading the car and I reached upward to put now-dry tents back into the roof storage container.  My first hint that I might have done some serious damage with that fall the previous morning.

Lots of driving that day as we proceeded from Matane to Gaspe’.  A delicious lunch at a roadside cafe’, where the chef/niece of owner sent me off with a bag of ice for my invisibly bruised ribs.

Q cafe east of Matane

I had not realized that the eclipse would be partially visible in the peninsula.  When the time came, it seemed a bit hazy, and the river darkened from blue to gray.  Most obvious sign?  The gannets vanished, and the gulls and cormorants moved in toward and to the beach.  Twenty minutes later, they were all airborne again!

Q cormorant

As we drove on, the landscape began to change, and so did our conversation.   Sixty-four years have brought challenges we could not have imagined in our dorms all those years ago.  I think we’ve handled them pretty well.

Q coastQ mountains

We reached the town of Gaspe’ in the early evening, settled into our hotel  ~ home for the next three nights ~ and went out to a restaurant we enjoyed so much that we would return the next evening.

gaspe restauant

By bedtime, I was hurting, but highly motivated for the next day’s gannet trip and promise of sunshine.  I turned down all suggestions of waiting a day, and went to sleep on my back ~ not a good sign!

 

Nine

Some days, I try to figure out which is worse.  Is it that he is not here, living his life to the fullest, that life in which we had invested every square inch of our own beings, everything we had to offer?  Not enjoying a family, not succeeding in his work, not taking photographs or making pottery?

Or is it that he is not in this world, sharing his multitude of gifts?  At only twenty-four, he was fluent in French, a comfortable world traveler, a gifted writer, knowledgeable about history and science and literature.  I glance at an article about desperate need in French-speaking Africa and wonder why he is not here, lending his talents and expertise to creating solutions.   I see a new architectural design and imagine that he might have participated in its development.

Or is it that he is not here with us?  Not here to add his considerable wit to the political predicament in which we find ourselves?  Not here to share his young adulthood with his twin brother and their little sister?  Not here to help us as we age, become less able, falter, and die?

Sometimes, in the course of my ministry, I meet elderly men and women who tell me how close they are to the brother or sister with whom they have shared eight, once even nine, decades.  I smile and say something encouraging.  I want to hollow out the landscape with my cry into the nothingness that is left.

***

I remember little of the first years.  Some things.  The suffocating, nauseating guilt.  The icy rejection which slammed me against a brick wall.  The feeling of falling, falling, falling . . .  of stepping across shards of glass. The way my joints, and back, and head, and gut, and everything, hurt.  The way I went to classes and wrote papers and looked at the grades . . .  always good grades, always gracious comments, always such a disciplined and even sometimes insightful student . . . with no recollection whatever of having written those pages.  The way I walked, and walked, and walked, wondering if I might simply walk right into the stratosphere.  The questions people asked me . . .  isn’t it time to focus on life? don’t you feel wiser, more compassionate?  don’t you find comfort in your faith?  . . .  causing me to understand that I had moved to Jupiter, or perhaps little Pluto, not even an official planet anymore.  Pluto. That sounds about right.

***

It takes a long time.  A recently widowed parishioner wrote me a note this past week, mentioning that she believes that the American tolerance for grief lasts about three months.  I can understand how it is that no one knows about this.  I look at my friends, reeling from the deaths of children six, seven, eight, nine, ten years and more ago, and I see how productive and engaged and filled with joy we all are . . . and yes, we are, filled with costly and hard-won joy, for we know, if we did not before (and I, actually, did . . .  I’ve known since I was seven . . . ) that it can all be erased in a second . . .  but I also see the things which are not so visible.  The shadow which crosses a face standing in the crowd at a wedding.   The smile and slight shake of the head when a baby is offered as a gift from a beaming mother.  The step out the door and onto the porch when the laughter over the antics of small children echoes throughout the house.

***

The last couple of years have been much easier.  I don’t know why.  I suppose the wavelengths of grief stretch and become more flexible, given enough time and practice.  That did not stop me from twice bursting into tears at my desk during the most recent Christmas season, grateful to be the only one in the building when an unexpected letter arrived from a high school classmate, last heard from 45 years earlier, who has lost one of her own sons, and when a FB message appeared from one of my son’s roommates, silent since the shocked condolence letter written years ago, and now a husband and father in his home country, France.

***

Who, I wonder would he have become?  Would he have continued with his corporate career; would we have returned to Chicago for a B-school graduation?  (Unlikely.)  Would he have left that life behind and begun to nourish the artistic gifts he resisted, begun to write and travel, relaxed into the world that beckoned him to so much? (More probable, given enough time.)   Would he have become a husband and father?  That woman, or another?  Would he have been tormented by episodes of depression, or would he have found hope and possibility where it one night seemed that none existed?   Would he be up in Canada right now, or out on a soccer field, introducing a small son or daughter to the world?

***

I live my life.  I do good work, important work.  I extend myself for my family.  I do love this world.

***

And there is not a day on which I do not breathe, Come back. Come back to me. Come back.

 


Our son Josh died by suicide on September 2, 2008.

 

 

 

 

Family

Casha and AlyasaI puzzle over questions of race and religion and nationality as I try to figure out where my piece is and how it interlocks with the others.  I preach and teach about diversity and global community, even as I know that those matters are more complex than I want to admit, because my deepest gut desire is for people to love and enjoy and celebrate one another.  But the truth is that I mostly hang out with white Protestant Americans who are about my age and live in the suburbs as I do.  I didn’t do much to make that happen, and I haven’t done much to change it.

And so the world has come to me, and my incoming family members have brought their own identities and histories right into my living room and said, “Here we are, full of love and peace and joy and hope!”

 

 

 

Talking About Race

I wondered, yesterday, about posting a few sentences about my discomfort in speaking in a varied racial context.  It’s a difficult topic, one with which I have become less, rather than more, comfortable over the years.  As with pretty much everything, the more you learn, the less you know.

I grew up in a family (in a rural, all white, Midwestern community) in which overt bigotry and discrimination were not tolerated.  I remember well the shock I felt when I discovered in junior high that my maternal grandmother was vocally and unrepentantly racist.  My mother was long gone by that point, so I couldn’t ask her about it; all I could manage at that juncture was to absorb that my extended family and my immediate family were two distinct entities with respect to questions of race.

But the lack of overt racism in my family concealed something just as insidious — an unarticulated attitude that “there are no differences among us,” which disguises, at least for white people when in the majority, a belief that “everyone is the same to the extent that everyone is like us.”

As the decades passed, I learned differently.  Even in our universal longings ~ for love, for kindness, for peace, for justice ~ we differ in that we hope and speak and act from different experiences and different perspectives.  My own dream is always to celebrate our distinctiveness while growing in relationship, but I am finding it harder to know how to do that in honest and generous ways.

My own primary experience of having been the “outsider” was my six years of teaching in an Orthodox Jewish school, in which I was one of about five Christian teachers in a faculty of about 50, and in which every student was either a Conservative or Orthodox Jew.  It was a period of learning to listen and hear differently, and learning to understand in my bones and heart rather than merely in my intellect that my community and individual perspectives were not family rooms in which to lounge with the relaxed confidence of being a member of the dominant culture, but posed significant challenges to all of us in this world.

When I served a church in the same neighborhood as the one in which I participated yesterday, our congregation was joyfully diverse ~ but we only had two years before we closed, and had only just begun to explore our back stories together.  My last and present churches are nearly 100% white in communities similarly constituted, and questions of race barely ripple the surface.

The more we learn, the less we know.

 

Women’s Ministry

I was a little nervous.  Maybe more than a little.  A friend and colleague from my days in another church and community, a pastor with whom I had shared monthly gatherings as part of an ecumenical ministry group, had invited me to spend today as one of the speakers for her annual Women’s Week-end.  “What do you want me to do?” I asked insistently.  “Just tell your story,” she responded.

I was a little nervous.  For one thing, I don’t really do that ~ tell my story, out loud, in big public settings.  I went to a Biblical storytelling conference last winter; a compelling educational week, filled with ideas new to me, with exciting ideas for ministry, and with a community of gracious, generous women clergy.  Several of them signed up to tell their own stories one evening.  I wasn’t one of them.  I guessed, mostly correctly,  that the participants would be telling stories with good endings; stories, that is, in which everyone is still alive at the end.  Not one of my stories.

For another thing, my friend and colleague is African American and, while I knew her church to be genuinely and lovingly diverse, I wondered whether anyone would care about what I had to say, or how I would say it.  Black preaching is different from white preaching.  The black clergywomen I know exude an inner and fearless power that . . . I don’t.  (A lot of white clergywomen do, too, of course.  But my style is different.  Very WASPy in a reserved sort of way.) Also, black churchwomen tend to wear hats ~ elaborate hats.  I don’t have any hats.   I am good with as much diversity as possible, but I was actually quite nervous about the hat issue.

Ah, well, I sighed.  I would go.  I would be myself.  I would tell my story.  No hat.

What I discovered was another group of tremendously gracious and generous women.  Black and white.  Older and younger.  Women who preach and pray as if they are on fire.  Three women from my former church came, and was it ever a great gift to spend several hours with them!  I met a college student who is majoring in Human Rights and impassioned about the issue of sex trafficking, and is a woman on the move to make a difference in the world.  I learned about a couple of significant church outreach events ~ for the past two weeks, for instance, instead of a children’s Vacation Bible School, the church held an event for girls 7-17 designed to bolster self-esteem, build community, and have fun.

And at the end, a lovely woman about my age came up to me and grasped my shoulders and told me something of the stories of suicide loss and devastation in her family.  Heart-wrenching stories, in which some people are dead and some are alive.  Like my story.

I left out some things which I had intended to say.  It was clear to me that, if I am going to do this sort of thing, I need to make some improvements.  I was, in fact, the only white clergywoman there, and there were, indeed, a few women wearing hats.

But I am so grateful to have been offered another opportunity to reach out, and to have learned, thanks to a pastor who was once down the road from me, that perhaps I do have a story to tell that might make a difference to someone.   And I got to hear some women preach and sing and be generally awesome, and that was very, very good.

Thank you, Pastor D!

 

Friends

Tonight I am reflecting gratefully upon the presence of friends, friends with whom we share different things in different circumstances.

For me, today . . .

I went to my home church for the Pentecost service, and spent some time before the service  talking politics with two guys with whom I have served in various capacities.  These days, we are all part of a group making occasional visits to our U.S. Senators and Representatives, trying to be present and advocate for justice where we can.

At lunchtime, my husband and I went to a bridal shower of a young couple at whose wedding I will co-officiate in three weeks.  We have known the bride-to-be and her parents since she and our daughter were first graders together, and as families we have weathered some long nights in tandem over the years.  What a joy to see this young woman and her fiancé, whom we are just getting to know, delighting in one another and in their anticipated future.

I spent some time online with a friend trying to help her as she tried to help yet another friend ~ unknown to me, in a distant state, and talking suicide.  By the time we finished talking, the distant friend was headed for a hospital with another friend.  There was nothing joyful about any of that, but there was a sense of knowing what steps to advise someone to take that was oddly satisfying, and the hope that a life may be saved.  If it is, we won’t know, but that’s a good thing.

After dinner my husband I joined friends on a porch to relax and talk for a couple of hours ~ a summer event that has been going on for . . . well, a long time.  Many of us have known one another for nearly thirty years.    We know each other to laugh over the fact that some were itching to get home to the basketball game and others asked, “What game?”

Church friends, Montessori friends, suicide prevention friends, neighborhood friends.  It’s a rich life that we have here.

Northfield, Part I

billings_hall01

In the fall of 1968, my father, and probably my stepmother as well, although I don’t remember whether she was there or not, dropped me off at the Northfield School for Girls in western Massachusetts.  I was assigned to a 1950-60s dorm, a nondescript red brick building on the edge of a campus strewn with majestic Victorian and solid turn-of-the-century structures, and a roommate from the Massachusetts coast, with whom I became fast friends for the short time we were together.

I had chosen Northfield from a sea of school catalogs presented to me because it had a domestic work program (which we somewhat affectionately referred to as “the dummie program”).  Every day we donned long smocks and white caps to work in the kitchens or public areas of our dorms.  Among the catalogs directed my way in rural Ohio, filled with girls in expensive clothing seated at expensive desks and riding expensive horses, Northfield stood out as an island of solid practicality.

I had no idea at all about its the school’s founder, 19th-century evangelist D.L. Moody, or his original goal of providing women for the mission field with the best possible of academic educations, and then, across the Connecticut River, boys of little means with an education equivalent to that found in the most elite prep schools, peopled by the sons of bankers and lawyers.   I did not know that many of my classmates would be scholarship students, the daughters of teachers and ministers, or what that might mean in terms of the campus atmosphere (one distinctly lacking in a sense of economic privilege).   Boarding school in that era, with its universal cinder block bedroom walls, its lack of student vehicles, and its uniformity of dress (jeans and jean skirts, clogs and sandals,  turtlenecks and sweaters) tended to have a leveling effect upon its students.

Northfield was a tough place for me.  I was already experienced in boarding school and summer camp life, and made friends easily.  But the academics were hard ~ I was immediately dropped back a year in Spanish, and could barely keep up in some of the advanced classes to which I had been admitted.  I didn’t make the basketball team or receive even a non-speaking part in the fall play.  And school counseling being what it was in those days (not), and me being at perhaps my lowest point in lifetime maturity (age 15! ~ although 14 or 16 might have been worse), I did not seek out, and no one offered, the kind of support that would have encouraged me to see a tutor, increase my basketball skills in a gym class, or spend some time on the stage crew in order to learn the ropes (no pun intended) of a high school drama program.

The late 1960s were also upon us, and cultural changes slow to make their way to Ohio descended upon New England’s boarding schools almost as swiftly as they appeared on college and university campuses.  For us, it was everyday life.  For our teachers, I was to learn later, the changes in clothing, music, and recreational activities (!) were swift and incomprehensible.  I recall my French teacher’s angry announcement one spring morning: “I don’t care WHAT changes have been made in the school dress code!  You will not display bare toes in MY classroom!”  Of course, it being 1969, she might have discovered far more consequential matters with which to concern herself, had she not been so distraught about sandals.

 

To be continued . . .

(Imageof Billings Hall, where our French and Spanish classes were held ~  from http://www.northfieldopportunity.org/photogallery/)

 

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