End of Life 3/3

breath air

Earlier this week, as a way of remembering Howard Gray immediately after his death, I flipped through a few of the emails I’ve received from him.  One of the first that popped up, written a couple of years ago, suggested that I read When Breath Becomes Air by Paul Kalanithi, M.D.  It looks as if I didn’t respond to the email, but I think that I had already read the book at that point.

Lucy Kalanithi, M.D. was the other main speaker at the Dayton conference a  few weeks ago.  The book (which I am not going to review here) details her husband’s experience with lung cancer; Lucy finished it after he died.  Paul Kalanithi was a brilliant young neurosurgeon when his diagnosis disrupted his life, and forced him to shift from physician delivering bad news to patient on the receiving end of a devastating report.  It’s a must-read for anyone whose life has jolted from one of ordinary dailiness (not that Paul Kalanithi was ever ordinary in the sense of the word which most of us understand) to the high drama of end-stage cancer.

Lucy spoke about the challenges she and Paul faced after his diagnosis, including

  • facing one’s own mortality
  • questions of identity ~ who am I now?
  • facing death and uncertainty
  • and the tension between living and dying.

That last one I remember so well from my stepmother’s stage 4 lung cancer diagnosis.  How do you deal with in-your-face issues of serious illness and likely imminent death and simultaneously forge a life among your family and friends?

Lucy left us with two poignant reflections, the latter emerging from the Q-and-A period and much discussed at out table.

The first had to do with Paul’s statement of desire: “I want everyone else to take care of Lucy so that she can take care of me.”  What a powerful recognition of, on the one hand, the needs of the primary caregiver, and on the other, the need of the patient for someone who can focus her life entirely on his need for care and support, to which everyone else can contribute by providing for the caregiver.

The second had to do with their conscious decision to have a child whose father would probably not live to see her grow up, whose father might not live to see her at all.  For the Kalanithis, their daughter was, and is, a life-giving source of joy and, while some shuddered at the thought of the courage required of her mother, most at our table could appreciate the powerful desire for love to break forth in the form of the birth of a child, even, or perhaps especially, in the heart of a sojourn toward death.

Please read this important book.  It illuminates an all-too-common experience, and may be the trigger you need to start a much-needed conversation with a loved one.

 

Rev. Howard Gray, S.J. (1930 – 2018)

HJG

As a middle and high school teacher (my second career) fifteen years ago, I was in need of a graduate course in literature or history, which I could not find.  Hmmmm . . .  Spirituality and Narrative sounded interesting.  “Who is this Gray professor?” I asked the department secretary.  “He’s new,” she responded.  “But people seem to like him.”  He was out of town for our first two classes, and a friend and I wondered distractedly about missing the date for a course refund.  What if we didn’t like him?

We did.  In fact,  I was mesmerized by the eloquent, well-read, humorous, and delightful 70-something Father Gray.  I took another course in literature from him.  And then a third, on Ignatian spirituality.  It was early in that semester that I asked him if he would serve as my spiritual director and help me make the Spiritual Exercises – a long adventure in prayer and one-on-one conversation.  I knew that my request would mean an hour of his time every week or so for months, so I was sure that he would turn me down.  But I so wanted whatever it was that filled this brilliant and elfin-like man with such an infectious joy.  “Oops,” I thought, when he said, “Sure,” and pulled out his calendar,  “Now I have to do this!”

That “Sure” changed my life.

As it tuned out, that was a year of relative peace and lack of drama for me, a leader in my local PC(USA) congregation, a teacher in a Jewish school, and the mother of three college students.  A perfect time to spend hours on a practice of prayer devised by a Catholic saint nearly 500 years earlier.  A couple of months in, it occurred to me to google Howard’s name and I discovered, to my astonishment, that this gentle and unassuming man was known across the globe as one of the foremost scholars and teachers of Ignatian spirituality.  Oops again.  What should I do?  How could I continue to take up so much of his time?  Eventually I concluded that, since he didn’t seem to mind, I would press on.  A few months later, I threw all caution to the wind and announced that I was going to seminary.  Howard, who was not supposed to say much of anything beyond a few suggestions as I made my way through the Exercises, exclaimed, “Will you get going?!”

Months later, I finally made it to seminary in Pittsburgh, and also started a program here in Cleveland for would-be spiritual directors.  Howard moved on to Georgetown, but we stayed in touch via email — I mostly complained about my courses in Greek, and he offered encouragement and witty commentary.

My darling Josh, my tall and blonde and blue-eyed and funny and brilliant son, died of suicide just before the beginning of my second year of seminary.  Howard was one of the first people I emailed, and he became one of what would eventually be a group of three Jesuits who encircled me with listening hearts and occasional words and hours and hours of presence.  It’s no exaggeration to say that I would not have survived those early years without Howard and his brother Jesuits, my personal lifesavers.

As I’ve written on FB, some months, maybe a couple of years, after Josh died, I was  ready to give up on everything – quit seminary, quit ministry, go live in Greenland or someplace. “Well, of course you can quit,” said Howard. “Or you can keep going for what may turn out to be the most productive years of your life.” I don’t know yet whether or not he was right. But he inspired me to try.

That’s the thing about those Jesuits.  They seem to be under the impression that one can do impossible things where God is concerned, and they don’t make a big deal about it.  Most especially, they don’t tell you that you can’t move forward just because your life is a mess.  They think that you can.

It’s been nearly 15 years since that first class with Howard, nearly ten years since Josh died, seven and one-half years since I was ordained in the PC(USA).   I have a stack of emails, most of them offering counsel and encouragement after my son died, but many others filled with humor and recommendations for poetry and other reading.  I often preach and teach things I learned from Howard, and I hope that when I am with people who are suffering or dying, I remember what he taught me, mostly through example, about presence.

I know that, with his death two days ago from injuries sustained in a car accident on Friday, the accolades will pour in.  He held positions of enormous responsibility and influenced thousands of people.  But to me, Howard Gray is that white-haired man with the gleam in his eye, the wicked sense of humor, and the capacity to be present to any experience of faith, from the highest mountaintop of exuberance to the most vast desert of desolation.

I will miss him very much.

 

Image:  Georgetown University, 2014.

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.

End of Life 1/3

I suppose that I’ve always been intrigued by end-of-life issues.  So many early deaths in my family.  I volunteered for hospice decades ago, as a follow-up bereavement counselor — something that I thought was important for post-loss health, and something that I could do on my own schedule, on my phone, when my children were small.

I became much more interested in the realm of end-of-life care when my step-mother Jewel was dying of lung cancer.  It was a brutal experience for everyone involved.  If there was something that an oncologist could do wrong in treating someone with cancer far advanced at diagnosis, hers did — and refused to discuss other options with me.  My niece had also been a hospice volunteer and drove around for those four months with a box of materials in her car, my brother reached out to a social services agency, and I visited every few week-ends.  All of our efforts to provide my father with help and to offer both of them with a more humane experience were for naught.  Jewel was convinced that to decline aggressive treatment would be “to give up.”

A few years later, when I was a chaplain intern over the summer as part of my training for ministry, I saw much of the same on the medical intensive care unit of the hospital in which I trained.  So many tubes and machines, so many aggressive efforts, so many patients and family members unwilling to let go.  Of course, none of us can predict our reaction in similar circumstances — but I used to come home at night (or early in the morning), collapse, and say, “If anyone ever utters my name in the same sentence as the a phrase which includes that particular floor, being me home immediately!”

As a pastor, I have seen many people seek hospice care only a day or two before death is likely to come, and skip any form whatsoever of palliative care.    While there is much assistance available to ease the passage from this life to the next, physically and emotionally and spiritually and mentally, few people are aware of the options, and many share Jewel’s view: “Can’t give up!”

A few weeks ago, I was privileged to attend an outstanding conference on end-of-life care, and to share it with good friends: one a trained chaplain and two of them nurses — one of them now caring for her 90+ year-old father at home.  In the next few days, I’ll share some of what we learned.

Back to Birds

It’s been a long time.

I’ve been studying up on migrating warblers and their friends — sparrows, shorebirds, waterfowl — for the last week or so.   I’m keeping a running chart, adding a photo of a bird, or two or three, each day, as I try to re-learn identifying features and colors.

waebler

I used to know a lot of birds.  I got into birds when I was in law school, and for years they provided a respite from an intense and competitive professional life.  I had many wonderful opportunities ~ teaching as a volunteer at The Museum of Natural History, hanging out with photographers and eagle researchers, participating in field trips in Ohio and Ontario.

We kept up with birds as a family for a few years when the kids were small, but then . . . soccer, and school, and life in general intervened.  For many years, I’ve gone out once or twice in the spring to look for the migrants, but I haven’t had the energy or interest to take them more seriously.

This year, I’m suddenly inspired.  And so I am making these charts, and remembering.  Some of the birds I could identify immediately; others are taking some work.  But what I’m finding to be really fun is re-discovering memories of the people with whom I’ve spent serious bird time.

  • Prothonotary warbler: BW, pausing on a dike in Ottawa NWR, to take a look at that shimmering golden-orange creature and saying, “Look at that sweet thing.”
  • Ovenbird: A herd of birders at Crane Creek, determined to get a look at one small fellow scuffling in and out of the underbrush.
  • Spotted sandpiper: HW, guiding us along a marsh somewhere, and explaining a flight pattern that I recognize instantly, 40 years later.
  • Scarlet tanager: A young teacher, who would die in a car accident shortly thereafter, standing in the rain amidst a migrating wave of birds and exclaiming, “Black-winged redbirds!”

I saw a post a couple of days ago from a birder in Central Park, who had a nice long list of sightings from earlier in the day.  My list from this past week is pretty short.  But I feel alive and connected to the natural world in a way that has eluded me for a long time.

 

Image: Common yellowthroat, from Wikipedia.

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. 

Church Ecology

Our adult Sunday School class at church is reading a book entitled Slow Church: Cultivating Community in the Patient Way of Jesus.  I made the choice, designed to help us explore possibilities for slowing down and re-imagining choices for community during a time of transition.

Today we embarked upon a section of three chapters called “Ecology.”  Why, I wondered all week, did the authors pull material on wholeness, work, and Sabbath together under such a  general heading?

I finally began to think about what the word ecology means: the study of a system and how its parts fit together and relate to one another, successfully or not.  And so we began with a discussion of the ecology of a field — the nutrients of its soil — nitrogen, sun, water) its products (grain, vegetables, fruits), and those who make heir living from what it produces (rodents, snakes, insects, birds, us).  All of those diverse parts are necessary for a healthy field ecology.

craggy gardens

I’m not sure that we quite made the transition to church ecology, but we did talk about our call to stewardship, of field and church, about the fragmentation and broken places in the church, and about what might be required to heal that fragmentation.

How might we become open to specific possibilities that we might be inclined to reject off the bat, but might be welcomed by others and might enlarge and deepen our community and practice of worship?  How might we imagine ourselves as a community with an ecology sustained by a healthy diversity and web of relationships rather than isolated preferences?

We weren’t quite so articulate as I’ve implied, but it was a start ~ and a fascinating way to consider church community.  Next week perhaps we’ll make it through the chapters on work and Sabbath, and make some progress on articulating our own ecology.

 

Photo: Lovely Daughter hiking in Craggy Gardens off the Blue Ridge Parkway in North Carolina.

 

Learning New Things: Hamstrings

I was never a person, even as a young girl, who could touch her toes.

As my body has aged, I have progressed from “naturally inflexible” to rigidly stiff and pained.  Yesterday The Lovely Daughter and I went hiking, on mildly strenuous trails through a rocky gorge.

nelson ledges

The downward trails were challenging to these achy knees and uncompromising thighs.  A couple of times I chose slides on my rear rather than attempts at navigating the trail.  And today ~ oh, I am feeling old!

I came home and did some reading.  Probably many of you are aware of studies showing that being able to rise from a seated position on the floor without using hands and tables and chairs for assistance is a sign of overall health and future longevity.  I gave it a try.  It appears that my demise is imminent.

This afternoon I educated myself about hamstring muscles, the muscles that help to form the backs of our thighs.  (How did we tolerate life before the internet, with libraries closed on Sundays?)  There are three of them, the hamstrings, and they wrap around and find their final resting place alongside the knee ~ and thus their stiffness accounts for not only mobility challenges, but also for knee pain.

And so I have a new yoga and stretching program, focused, to start with, on those poor hamstring  muscles.  It has occurred to me that, when I broke my ankle some years ago, the physical therapy required after surgery began with the smallest of (attempted) movements, repeated several times a day, and transformed me from someone who could not move her ankle even a fraction of an inch in any direction into a regular walker again.  It took months, but it happened.  Why not repeat the process?

My rapid decline is not inevitable, I think.  I have no ambitions like The Quiet Husband’s ~ he runs in senior track meets! ~ but I have modest goals for long walks and strength and flexibility.  Maybe even backpacking again.

With my newfound anatomical knowledge, I feel a slight surge of optimism.

 

Photo: Nelson Ledges in Northeast Ohio.

No Hospice Time

Trigger Warning: Parental Death

Several of my friends have lost or are in the process of losing parents, parents who have been or are in hospice care.  I admit to being a bit envious.

When my dad was diagnosed eighteen months ago with lung cancer for the third time, he and my once-stepmother-back-together-again immediately began looking at treatment options.  The initial information was sobering — multiple lesions in his lung — and the news became more dire as a scope was recommended and then not, due to a tumor wrapped around his pulmonary artery.  I was surprised that he was considering chemo, as the brutal death of his fourth wife, from lung cancer treatment as much as from the cancer itself, had caused him to swear several years earlier never to fall victim again to such medical excess.  But the impetus to live is strong . . .

I went down to visit for a couple of days while he awaited further testing which he had inexplicably rejected a couple of weeks earlier.  I said that if the cancer had spread beyond his lungs, he might want to consider wrapping up in a sleeping bag and spending his remaining time sitting on his deck, enjoying the woods and creek below, and the birds visiting his feeder.  It was November and he was nearing 85; it seemed like a plan to me.  He seemed to hear and not to hear.

My stepmother told me later that they were hoping that the chemo would eradicate the cancer as quickly as it had appeared, and that he would have several good years left.  I decided to remain silent, and headed home, beginning to work out in  my head how I might arrange my schedule to accommodate several trips to their home four hours from mine, as I had been able to manage when my previous stepmother was dying.  I had read about tumors encasing pulmonary arteries, but I permitted myself to imagine that it would be a privilege to care for my father, if there were time in which to do so.

Three mornings later he was doing laundry just off the bedroom, and collapsed and died. Presumably that wraparound tumor had ruptured the artery. After a mad dash to the hospital and a declaration of death, the paperwork for his donation of his body to the medical school was completed and he was transported to . . . somewhere.  The test results, confirming the spread of the cancer across and into multiple areas, came back a few days later.

I admit to being a bit envious of my friends who’ve had hospice time.  I guess that conversation about the deck and the sleeping bag and the birds was it for us.

 

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