Book Review of a Classic: At the Will of the Body

Once every so often I would glance at Arthur W. Frank’s memoir, At the Will of the Body, in my chaplain book collection and have a feel-good memory about it without knowing precisely why. I had not read it since the time I first started training to be a healthcare chaplain, which was in the late 90’s. What book could be that phenomenal that I still have fond memories of it for more than fifteen years? I decided to find out and reread it. Short answer: that one qualifies. The author is a highly articulate renowned sociologist who expresses his experience of two different sorts of diseases without rancor and without sentimentality. (He has since written  much more about “illness narratives.”)

As I read his experience of a heart attack and then of cancer, I found myself at the source of so much that I have incorporated in my interactions with patients. Straight off in the opening pages he asserts, “[The problem with] taking recovery to be the ideal is, how is it possible to find value in the experience of an illness that either lingers on as chronic or ends in death? The answer seems to be in focusing less on recovery and more on renewal. Even continuing illness and dying contain opportunities for renewal.” (p.2) Though I would rarely say so in so many words to a patient, on the right occasion I can guide a patient with open ended questions to making a perspective like that another choice to consider.

A recurrent theme throughout At the Will of the Body is his partially satisfying interactions with doctors and hospitals. Yes, they excelled medically, but fell far short spiritually and emotionally. For example, he says his doctor and he “talked about my heart as if we were consulting about some computer that was producing errors in the output. ‘It’ had a problem….Professional talk goes this way:’ A problem seems to have come up…Here’s our plan; any questions?’ Hearing this talk, I knew full well that I was being offered a deal. If my response was equally cool and professional, I would have at least a junior place on the management team.” (p. 10) As chaplain interns reading this book, we all yearned to be the ones to fill in the spiritual gap, thus the purpose I am sure we were to read it. If only one of us had been there, we thought, to “recognize the patient’s fear, frustration, and personal change,” he would not have suffered as much.

This book is so quotable. Just about every sentence would be a worthwhile Tweet. I noticed when I looked around at other blog reviews, at least one was more filled with quotes than commentary. Oh, I can’t resist either: here’s another: “The time when I cannot immediately put something into words is usually the time when I most need to express myself.” Doctors, as well-meaning as they may be, usually have no time for more than immediate dialogue. The beauty of making chaplains available is that competent ones are all about slowing down. About allowing no competitors for attention such as other people in the area or God forbid a digital device. They have the precious gift of open-ended time, where conversations can unfold at the deliberate pace that it takes to build trust, to risk being vulnerable, and to let pent up emotions gush out.

I hope that these many years later, that the book has become outdated in that respect. I hope chaplains are indeed filling in the gaps, and that doctors and nurses are more aware of how they can let their own “inner chaplain” at least spring into play long enough to acknowledge with a sentence or two what the patient may be experiencing. After the heart doc explained his plan of care to Arthur, he could have added, “Gee, this must really an earth-shaking experience for you.” Of course the danger here is that this might cue the patient to vent for a long time, but I think most know that the doctor’s time is very limited. This risk is worth it to make someone feel like a human being just with one sentence. Besides, a chaplain might be practically at the doctor’s elbow, waiting their turn to be there for you.

Post Script: I was going to end the article here, but when I looked at Twitter today, I saw a reference to the August 13th 2015 article in the online “Well” section of the NY Times called, “Doctors Fail to Address Patients’ Spiritual Needs.” The article is written by a doctor, who sees a heart-wrenching case and wonders if he is even to contact a priest, let alone bring up anything spiritual himself. He concludes, “I still regret my silence with that patient, but have tried to learn from it. Doctors themselves do not have to be spiritual or religious, but they should recognize that for many patients, these issues are important, especially at life’s end. If doctors don’t want to engage in these conversations, they shouldn’t. Instead, a physician can simply say: ‘Some patients would like to have a discussion with someone here about spiritual issues; some patients wouldn’t. If you would like to, we can arrange for someone to talk with you.’” Attaboy! Talk to us chaplains and make referrals!

Alas, At the Will of the Body is as timely now as it was years ago.

In One Ear And Into Another. Maybe.

You, a hospital patient, are meeting me for the first time. A sound-proof curtain divides the room between you and your roommate. Wait a second. Sound-proof curtain? That’s my bit of compassionate science fiction for the moment. If that kind of curtain existed, probably the percentage of patients who shared their true feelings and concerns with chaplains and others would soar. Even with total privacy, a patient who divulges their innermost thoughts to me is taking a gamble. Will I be insensitive to her making herself more vulnerable through such sharing? Will I fail to acknowledge her pain because I am distracted, incompetent or tired? Will she have wasted precious energy in our exchange? Or will the gamble be worth it as I validate what she is saying? So much of my verbal and nonverbal communication is about encouraging the patient to take that risk.

The hear-through curtain is one of those variables that make the gamble more risky. The roommate might be indifferent or asleep or wrapped up in convoluted problems of her own, but then again she might be eavesdropping. She might not be as friendly to you in the future. Or maybe what she overhears might disturb her. Thus sick people have the burden of this social calculus as well as the disease itself.

Assuming you cannot leave the room just then to come talk with me in a more private place, my action to create a space just for you and me may seem nothing more than some mystical idea in my head only. But this is what I do: besides keeping my voice down and sitting very close to you, I intensely focus just on you as if there was nobody and nothing else that could siphon off any of my attention away from you. I hope that by not glancing around the room, least of all at that spurious “privacy-granting” curtain, that my serious tone signals to your roommate that our conversation is none of her business. I hope my focus gives off the signal to anyone who happens by from the hallway that they are not to consider themselves included. I like to think I am carving out a private space for us, or at least that you sense my intent to do so.

If we are patients, may we come across the kind of person we sense it is worth the gamble to vent to. If we are caregivers, may we find ourselves ready to receive and confirm the patient’s experience, and to clear away or mitigate barriers to such reception.

A Dutiful Daughter’s Keeping Grief at Bay

Judith Henry, author of The Dutiful Daughter’s Guide to Caregiving: A Practical Memoir has an offbeat yet compassionate way of expressing herself, thus her inclusion here. For instance, advising us to “write our own obituaries to have the last word” is a novel take on the matter and humorous at the same time. Judith has a knack for describing what caregivers go through and what advice they could use, paving the way for those about to begin this role as well as affirming the complexities that more seasoned caregivers face. Her book also shows you what it might be like just after a loved one dies. There is the usual mixture of anger and sadness, but also the use of sarcasm and incongruous images.

It is worth pondering how using sarcasm and unexpected comparisons can help us grieve in the beginning. Death of a loved one is too much to take in, so any strategy we can latch onto to let this information come in a little bit at a time is a blessing. I have met with survivors who even months later would wonder out loud whether so-and-so was “really” dead. They knew this intellectually but could not absorb it emotionally. As Judith confronts the death of her mother, she uses humor to distance herself from the awfulness, to defend herself against it. Perhaps reading her description below will suggest how you too can find a way to add humor to your arsenal of healthy defenses if you are currently grieving.

[From a  section called,Dealing with Grief and Loss] “How many times can a daughter say the words ‘my mother has died’ without crying? For me — the stoic, the realist, the pragmatic ‘death is all part of life’ philosopher — only once.

A week after Mom’s passing, I drive to Orlando with my current ‘to-do’ list in hand. The first of many that serve to keep the grief at bay, this one addresses the business side of loss. The day is gray and rainy.

I’ve mapped out each step of my visit, beginning with the funeral home to pick up my mother’s ashes and multiple copies of her death certificate, which are soon to be handed out like flyers everywhere she’s had an account or an enrollment of some kind.

The funeral director speaks in hushed, respectful tones, but I don’t blink an eye when he presents me with the small, white cardboard box containing her remains. It looks like a present in need of a bow and with my lifelong tendency to ‘awfulize,’ I imagine someone breaking into the car to steal it. Figuring that my mother, of all people, would understand, I place the box safely in the trunk as I go about my other errands.

Next stop is the Orange County Courthouse to file her last will and testament. I get lost downtown and end up parking blocks and blocks away from where I need to be. After a twenty-minute hike in heels, I enter the security labyrinth of the courthouse lobby and stand speechless as a guard roots through my purse and proudly confiscates a pair of tweezers. What a relief that the chin hairs of Orlando, mine included, are safe for another day. The head of security tells me I can retrieve them on the way out. Like I am really going to add that to my freaking list.

Finding the second-floor Probate Division takes forever and requires directions from several people. When I finally walk into the right office, a woman with a genuine smile looks up at me from behind the counter and says in a warm southern drawl, ‘How can ah help you?’

The words ‘my mother has died,’ spill out of me with a flash flood of tears, and when she reaches out and squeezes my hand, I cry even more. Minutes later, I leave with a gift of tissues from her desk and a suggestion to do something nice for myself that day.

Arriving next at the neighborhood bank where my parents have kept a checking account and safe deposit box for more than 40 years, I walk up to Juanita, the young woman at Client Services, and say, ‘I’m here to close an account. My mother has died.’ The last sentence is barely out of my mouth when she comes around the desk and wraps her arms around me as a parent does a child. And I, almost 60 years of age, rest my head on her shoulder and sob.”

 

Judith Henry: "How to have the last word: write your own obituary"

Judith Henry: “How to have the last word: write your own obituary”

Judith Henry’s Biography

In addition to working on her second book and writing for online publications, Judith leads a well-loved writer’s group for caregivers, and does presentations on caring for aging parents, the benefits of expressive writing, how to create a legacy letter for family and friends, and having the last word by writing your own obituary. For more information about Judith and purchasing her book, go to. http://www.judithdhenry.com

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Announcement to my followers and visitors: Now hear this! Encountering The Edge: What People Told Me Before They Died is now available as an audiobook on Amazon and on audible.com. Go here for a free sample of the narrator’s emotionally touching voice (Cindy Pereira): http://www.audible.com/pd/Religion-Spirituality/Encountering-the-Edge-What-People-Told-me-Before-They-Died-Audiobook/B011CHH2BE

Foregoing Fireworks

One of Val's etchings

One of Val’s etchings

Instead of going in search for fireworks, my husband and I visited over sixty soldiers from the Revolutionary War buried about two miles from my home. After a July 4th ceremony in that church cemetery (the church was first built in 1697), I eavesdropped on the conversations of several clusters of people who were hanging around after a fifth grader sang the National Anthem and men dressed as colonial soldiers fired a 21-gun salute from a cannon. I paused at one cluster as I heard a man named Val speak of his commission to sandblast-etch a new stone for a soldier who fought alongside his father in one of the first battles of the war. As one speaker said during the ceremony, on June 6th 1780 the eighteen-year-old Hermanus Brown was “just a farm boy,” on June 7th, a “soldier” and on June 8th a “hero” when he was killed. The inscription taken from the original stone will read, Behold me here, as you pass by, Who died for Liberty, From British tyrants now I’m free, My friends prepare to follow me.”

As I changed from eavesdropper to conversational partner, Val took me around to the gravestones and explained how the lettering on them would give him some ideas for the new marker. He wanted to use a style that was contemporary with the other markers. Val made me notice characteristics I never have ever thought about before, such as the depth of the engravings, the decorative form of the letters, the fact that acid rain and salt erode the engravings, and that granite is much more durable than marble. As I looked carefully at the gravestones while he described how he makes modern engravings, I appreciated such things as the mix of script and print within one marker, and the variation in quality. One scribe was apparently an amateur because he ran out of room on one line and squeezed a few letters above it! Another had letters so ornate that they were a work of art. I also saw how the shapes of some of the letters in the alphabet had changed in the last two centuries. One last thing of interest is that some of the gravestones were sunk almost halfway into the ground, so I asked Val about that. He said it was preventable, though I do not recall the technical details.

A cemetery is a museum, not just a place to mourn. It is filled with the history of scribal art, language, trends (many child deaths), and in this case history of the independence of the United States. For a reflective moment and to capture the reverberations of community, you may someday wish to visit a local cemetery, or see one on your travels to new locales.

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A personal note and announcement:

Today marks the second anniversary of this blog. Many thanks for following and commenting or simply stopping in to visit.

Also…..(drum roll)

Encountering The Edge will soon be available as an audiobook. “Stay tuned” for details.

Wanted: Word For “Former Widow”

In her poem “Name,” Unitarian Chaplain Maggie Yenoki yearns for a word for “former widow” or “both widow and bride.” There is no end to the varieties of grief and of love, and we all want affirmation that whatever we feel is real. I include this poem as one step in our affirmation of Maggie’s new identity:

Name

What’s in a name? 

Googling this question takes you to Juliet’s rhetorical question of her beloved Romeo as he sheds his prized surname of Montague in William Shakespeare’s famous love story. 

My answer to this question comes from a heart matter as well, also illumined by death and by deep love. 

Six short months ago, when George & I wed, my name became the same as his.
We are One. Us.
We love Us.

Soon after the joyful whirlwind of our wedding day, the work began to change everything from Robert’s name to George’s.
From widow to bride?
No, I Am somehow both. 

Each time a straggling contact is informed of the name change, there is a palpable shift. A small but significant transformation of identity is granted with each edit, each deletion, each correction. I am not who I was. I am newly named. 

I now carry George’s name on every document; we inhabit one another. We love Us.

While no longer carrying Robert’s name on any document,
I carry him in my heart. I Am his widow.
There is no term for “former widow”.
We inhabit one another. We love Us. 

I wonder at the mosaic-like identity that comes with naming.
I wonder at my blended identity, widow and bride
I wonder at the identity of oneness. Us-ness. We are Us. We Love Us.

I am a new version of me, and a new name is appropriate.

Renamed by Love’s ever-enhancing life and expanding identity.
We love us.

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This poem comes from Maggie Yenoki’s blog, Your Soul Tender, at http://chaplainmaggie.tumblr.com   Maggie  received her Master of Divinity degree from Drew Theological School in 2012, and recently became a Candidate for Ministry in the Unitarian Universalist Association. She enjoys embracing newlywed life with her husband George, she loves serving those at the end-of-life, and is becoming certified as a Death Midwife and Home Funeral Guide. You can  contact her by emailing her at soultender.maggie@gmail.com    

The Finals Week Results Are In. Everyone Passed!

To celebrate finals week, my last post consisted of a real dialogue between a chaplain and her patient. I gave all of my readers a test to see if they could identify problems with how the chaplain did her job. I am reproducing the dialogue here for everyone’s convenience followed by my evaluation of the answers that over a dozen people gave. Smart but tough crowd! To see their original comments, please see my previous post. Here is the dialogue:

Chaplain: interaction #1   (The patient seemed alert and was sitting up in bed reading a book. The chaplain knocked on the door.)

Patient: interaction #1     Yes, come in.

C2     Mrs. Jones, I’m So and So, the chaplain-on-call.   I understand that you wanted to visit with a chaplain.

P2     (She smiled.)  I like the way you said that…”to visit with a chaplain.” Our minister said that there would be chaplains available to talk to if I wanted to.  (She winced some. I sensed that she might be in some pain.  I waited a moment and then responded).

C3     Indeed, I am here to visit with you, Mrs. Jones.  Am I picking up that you are in some pain right now?

P3    (Smiling but still wincing some.)  You observed accurately, Chaplain. I am having some pain.  Not a lot but some.  By the way, it’s Mary. (A slight pause).  I hate being in the hospital. The nurses are very sweet, and I have a very competent oncologist.  But being here is such a waste of time.

C4    Mary, you sound like a busy person.  It’s no fun just to lie here, especially in some pain, when you could be doing…what?

P4     I’m a manager of a large real estate company…Oh (she winces again).

C5     Mary, are you sure you feel like visiting now?  I could come back another time, say, in the morning.

P5      Chaplain, you don’t need to stay.  I know there’re probably some here worse off than me.

C6     Mary, if you want me to stay, I will.  You’re important, and you did have the nurse page me.

P6     (Smiles slightly).  Thanks, Chaplain.  I would like to talk…I really don’t want to talk about it…But (winces slightly…pauses.)…I know I need to…My family physician came by while my daughter was here earlier… [She then tells her concerns in the rest of this transcript]

My steller class picked up on three issues. The first was about the patient’s physical pain. Nancy makes the pun that the chaplain “wasted time” by discussing pain. Not only once, but three times she refers to it. Cathy acknowledges that the chaplain can ask about pain, but that she should then ask the patient what the patient herself wanted to discuss. Cathy by the way also picked up on the patient’s hesitation to ask for help, manifested by her saying to the chaplain that she probably has other patients to visit who are “worse off.” This hesitation was made worse by the chaplain’s ambiguous signals about her availability.

Vicki correctly explains that to be fair, pain must be addressed. The whole hospice team is supposed to address the issue of pain during a visit, and to report it to the nurse right away if necessary and if the patient gives permission to do so. But then, anyone visiting is free to address other issues. Peg says the chaplain shows discomfort through all this talk about pain and wants to run away from it. Now that’s an astute answer. Perhaps the chaplain was focusing on physical pain to avoid dealing with emotional and spiritual pain! DJ speaks to that as well.

Another issue was how the chaplain responded to Mary’s assertion that being in the hospital was a “waste of time.” Many of you said the chaplain should not have tried to guess what the patient meant by that. Let the patient do the explaining. You get an “A” for that extremely important point. As Gydle said, maybe the patient wanted to talk about nearing the end of her life and could think of far better ways to spend her time. Sande thinks the chaplain’s guess as to what wasting time meant was a lot more about the chaplain’s own issues than the patient’s. Right you are! Jessica said never to assume what the patient needs. Instead, ask an open-ended question. Jane got that right too. As for Elizabeth, she is being very very generous to us chaplains.

The biggest issue in my opinion is the mixed signals the chaplain gave about wanting to be there. Strangely enough, she is basically asking the patient if she is sure she wants the chaplain there. This wrong signal definitely came across because the patient takes it as a hint that the chaplain rather be elsewhere. I give Leah kudos for the following perceptive answer: “Maybe the chaplain was looking for assurance that Mary wanted her there.” Talk about having it backwards! Chaplains should be reassuring patients, not the reverse. Thus the chaplain was showing her own discomfort, which almost got in the way of a successful visit when she gave the chaplain a way to get off the hook basically by saying to her: “Chaplain, you must have more pressing cases than I to take care of.” The good news is that despite all of these problems, the patient went on at length about what she needed to say. (I did not show this part of the dialogue.) One lesson here is when we badly need to vent, we will take any listener, no matter how flawed, as long as some compassion is present (and maybe not even much of that quality).

My thanks to all for participating. We’ll have to do it again sometime. :-)

Celebrate Finals Week: Take This Test

When chaplains write down conversations they have with patients to share with other professionals, the dialogue may reveal a heap more about themselves than about their stellar patient care. We like to think we are showing off our expertise and resultant comfort, but as any chaplain in training knows, our own issues can subconsciously leak out, especially when we show the transcript for other chaplains eager to hunt for our rooms for improvement. That is why we write these verbatims: to find out what gets in the way of better care and work to get it out of the way in the future.

I took a portion of the following verbatim from an article in the chaplain literature. Since the article did not allude to what I saw as a problem, partly out of curiosity, and partly as a challenge, I now invite my readers to look through the transcript and identify the issue, or the principal issue. So if you can stand the suspense, read through it, comment if you can, and you will hear my answer in my next post. I will also wait until then to respond to comments, so everyone has a chance to take this “test.” Good luck! Whoever gives a great answer will get honorable mention.

Chaplain: interaction #1   (The hospital patient seemed alert and was sitting up in bed reading a book. The chaplain knocked on the door.)

Patient: interaction #1     Yes, come in.

C2     Mrs. Jones, I’m So and So, the chaplain-on-call.   I understand that you wanted to visit with a chaplain.

P2     (She smiled.)  I like the way you said that…”to visit with a chaplain.” Our minister said that there would be chaplains available to talk to if I wanted to.  (She winced some. I sensed that she might be in some pain.  I waited a moment and then responded).

C2     Indeed, I am here to visit with you, Mrs. Jones.  Am I picking up that you are in some pain right now?

P3    (Smiling but still wincing some.)  You observed accurately, Chaplain. I am having some pain.  Not a lot but some.  By the way, it’s Mary. (A slight pause).  I hate being in the hospital. The nurses are very sweet, and I have a very competent oncologist.  But being here is such a waste of time.

C3    Mary, you sound like a busy person.  It’s no fun just to lie here, especially in some pain, when you could be doing…what?

P4     I’m a manager of a large real estate company…Oh (she winces again).

C4     Mary, are you sure you feel like visiting now?  I could come back another time, say, in the morning.

P5      Chaplain, you don’t need to stay.  I know there’re probably some here worse off than me.

C5     Mary, if you want me to stay, I will.  You’re important, and you did have the nurse page me.

P6     (Smiles slightly).  Thanks, Chaplain.  I would like to talk…I really don’t want to talk about it…But (winces slightly…pauses.)…I know I need to…My family physician came by while my daughter was here earlier… [She then tells her concerns in the rest of this transcript]

 

Write your answer here, under “Comments.” I will give a passing grade to all who try, and an “A” and special mention for the best answer!