Common regrets/questions at the end of life, The Shield of Achilles

I was listening to World One Radio the other morning. Someone was talking about regrets at the end of life and by some miracle I had pen and paper at hand. Below is more or less what the person said – I was struck by the similarities to what I used to teach in hospice training and similar forums. I’ve added to the WorldOne list based primarily on what I taught (and still believe).

What this is about is that we have our life; we have our choices; this is it – no second chances except within the context of this life. In other words, it’s not too late. It’s getting late, but it’s not too late. Common regrets/issues at the end of life include, I wish I had…

Been truer to myself.

Been more loving toward the people who matter the most (what really matters in life is love).

Been a better spouse, parent, child.

Had the courage to express my feelings.

Stayed in touch with friends.

Not worked so hard.

Taken more risks.

Taken better care of myself.

Done more for others.

Let myself be happier and enjoy life more.

(One who sees the way in the morning will gladly die in the evening.)

—————-

The Shield of Achilles

Some years ago I knew a man who had been a doctor in the Iraqi army during the Iran-Iraq War in the 1980s. About 1,000,000 people (half combatants, half civilians) were killed in the desert and trenches and artillery and human wave attacks and poison gas and horror. Since that war, the following poem has resonated in me in an awful way.

Now a question arises, will America fight the next war against North Korea or against Iran? Here are some lines from The Shield of Achilles (WH Auden, 1955).

A plain without a feature, bare and brown,

No blade of grass, no sign of neighborhood,

Nothing to eat and nowhere to sit down,

Yet, congregated on its blankness, stood

An unintelligible multitude,

A million eyes, a million boots in line,

Without expression, waiting for a sign.

 

Out of the air a voice without a face

Proved by statistics that some cause was just

In tones as dry and level as the place:

No one was cheered and nothing was discussed;

Column by column in a cloud of dust

They marched away enduring a belief

Whose logic brought them, somewhere else, to grief.

—————-

I feel sick

 

 

Honor Thy Daughter (Review of the book by Marilyn Howell)

Honor Thy Daughter is the story of a mother and daughter’s journey through cancer. The daughter (Mara) has a highly aggressive colon cancer. Her mother (Marilyn) is the primary caregiver and the chronicler – what a time, what a terrible journey they had!

Mara

This was difficult to write. I felt that I should truly honor this book, these people, these truths. I hope that I have, to some extent. In the end, I used Marilyn’s words.

—————

Mara experiences the reality of some cancers: one treatment failure after another and symptoms, especially pain, uncontrolled for the most part. The physical disease is exacerbated by Mara’s difficulties in accepting the realities she is facing – she fights the disease, the dying, the realities of being young and beautiful and dying. Her mother supports her in this and in all Mara’s other responses to the disease. Both mother and daughter hope against hope that the cancer will be cured or at least slowed. To these ends, Mara tries virtually every treatment she is offered or can find – mainstream and alternative. Nothing works. The cancer progresses and the symptoms worsen. It’s a hard road. There are respites, but the direction (toward the end of life) remains the same.

I experienced this as a difficult book. The valley of the shadow of death is a tough place. For me, personally there was an eerie sameness in Mara’s experience and the year and few months I spent taking Phana to chemo and other appointments. Phana and Mara’s tumors (primary colon) were basically the same, as were their ages and the progression of the disease. Hours and hours and hours in the infusion room, waiting rooms, exam rooms, the car… But of course, Phana wasn’t my daughter.

I don’t recall if Marilyn ever says this directly, but it seems to me that what she was doing was practicing a radical acceptance of her daughter’s path through cancer – fully supporting Mara’s every decision. “It wasn’t until I returned home that I realized how much fear and grief I had been holding in check. I stepped into my house, shut the door, and screamed” (p. 52).

150 pages into the book, with the cancer spread to lungs, liver, and elsewhere; with pain uncontrolled; with nausea, vomiting, and other GI problems worsening; with weight loss and weakness increasing, with despair… Mara and her mother connect with a man (“Allan”) who is able to give Mara accurate doses of MDMA. She takes MDMA several times and each time she experiences clarity, relief from pain (the first relief since the cancer began progressing), and the return of appetite. But the symptoms return after the drug wears off. She also uses marijuana and LSD, both of which help, but still, the symptoms return. Finally…

“On Saturday morning, September 10th, it was nearly impossible to awaken her. Finally, at midday, she was alert enough for me to ask her if she wanted to take MDMA. Mara mustered all her strength to say yes before returning to her restless sleep – gasping for breath and moaning… I put a tablet under her tongue.

Her breathing gradually steadied and her body grew peaceful…

David stroked Mara’s hair as I read (from This Timeless Moment by Laura Huxley). Those words, my voice, and her father’s caress told Mara that we accepted her passing, that her death could be noble, and that she was not alone.

All at once she began to move. She took her right hand from beneath the covers, reached across to place it in her father’s palm, lifted her chin, opened her eyes, and turned her head toward him. She was radiant. In that moment, she was beautiful again. With her last breath she conveyed the rapture of her being, life’s final gift to her, and her final gift to us.”

—————-

And we live and we breathe and we have our being (Van Morrison).

—————-

Marilyn Howell, 2011. Honor Thy Daughter. MAPS (Multidisciplinary Association for Psychedelic Studies). Note that MDMA, psilocybin, LSD, and marijuana are being given to people with terminal illness and despair in research studies at Harvard, NYU, USC, and other institutions.

A bunch of names (Vietnam Veterans Memorial)

My friend, George Schools (who fought on Grenada), sent me this from his blog, My Name is Schools. Deeply touched barely touches my internal response. Thank you, George. (I added captions to George’s photos).

A BUNCH OF NAMES

Dear Charles,

The war is over

I hesitated to send you this, but you’ve written about your experiences in Vietnam, and talked specifically about Dwight Laws (KIA 10/30/66), Lurch Donohue (KIA 03/01/67), and Jerry Georges (KIA 03/23/67) in your blog https://ckjournal.com/first-post-vietnam. I’ve read these posts uncounted times, and I probably will continue to until I die.  Everybody should.  Still, they are your memories, and that is your life, and I didn’t want to overstep the bounds.

I just returned from a family vacation to Washington, DC.  You know my family, and you know me pretty well, I think, so you know that means that when we’d seen all the sights their patience could contain, I went off on my own.  I didn’t know if you’d ever been to DC and the Vietnam Memorial, or if that was something that even interested you.  In fact, I wondered if perhaps that was something you had decided you did not want to do.  So here’s the part where I tell you to just delete all this right now, and tell me to erase it all from my hard drive if you want.  I’m totally ok with that.  They are your memories, and that is your life.

So from this point on, here’s what happened:  I knew I wanted to visit the Wall.  I knew I wanted to find the names of Dwight Laws, Lurch Donohue, and Jerry Georges and send them to you.  And I knew I needed to be there alone, even though I never knew them, the war was over two years before I graduated high school, and they were just names to me.  Three names among 58,307 names of dead Americans.  But I was thinking I could find the names of these people who are very real to you, and you are very real and alive to me, and that would help me understand what I was looking at.

Dwight Laws (whose wife’s name was Barbara Laws)

Like my own Greek chorus, as I’m scanning panel 11E130 for Dwight’s name, a family passes by and a kid says “it’s just a bunch of names!” There’s a Vietnam vet volunteer there explaining the war and the wall and the names to people, and I hear him say loudly enough for me to hear a couple of times “just ask if you need any help,” but I didn’t want any help.  And I finally figured out how to find Dwight’s name, and here it is:

After that, it was pretty easy to find Lurch’s name (which was actually Francis, so now we know why your friend went by “Lurch”), and finally Jerry Georges .

And as I’m looking at all these

Lurch Donohue

names, and trying very hard to think about Dwight, and Lurch, and Jerry, I still wasn’t making the connection I’d hoped.  It was still just a bunch of names:  fifty-eight thousand, three hundred and seven names of dead Americans.  And then it occurred to me that your name was not on that wall.  There was no Charles Kemp.  It could have been, probably should have been, but it wasn’t there.  And I knew you, very real and alive to me, and Dwight, Lurch, and Jerry were not.

Jerry Georges (from Santa Barbara, California)

Charles Kemp, father to David, husband and companion, neighbor, citizen. Very real.  Thank you for making the Wall so real to me by being alive.

_________

To George’s post, I added:

And now the war is over.

The main Vietnam War posts.

 

Spiritual care at the end of life and across religions and cultures

Here is what two of my community health students wrote re connecting across religions (Christianity and Islam) and cultures (Western and East African) with a young woman dying from breast cancer. This is from about 10 years ago – all names changed. The students worked in two-person teams. The below words are one of the high points of my career.

Big Sur sunset

Margaret: “I think we were able to form/recognize a spiritual connection this week.  Lucy was sitting on something that looked like a blanket, and I asked Nabila what it was – she told me they were their prayer mats.  So, we started talking about prayer – how we pray, things we pray for – and then, there was a warm pause – not an awkward, uncomfortable silence, but one that communicated something.  I smiled and was comforted that Maryam and Nabila have this source of power and encouragement.  I like to think that we pray to the same God.  Even though we may sometimes pray and practice in different ways, we are still able to share our burdens and find peace in a spiritual being – what a comfort to know that Maryam and Nabila can experience this.

They have changed my life…really…this is one of the first times that I have really formed a relationship with a hurting person, who is not in my usual circle…  This habit, this choice (to choose to love people in this way) can be a part of my daily life – a reality that I want so badly.  And, I have been blessed.  I think about them all the time, and hope that I will not just think but do.”

Lucy: “This week with Maryam was very emotional and deep.  On Wednesday we were able to really talk to her about how discovering she had cancer made her feel.  She actually almost started to cry and it took all I had to hold back the tears.  It’s amazing how much she is opening up to us as we spend more time with her.  I am so glad that we got an opportunity to talk about important issues like what she expects out of life these next few weeks…  I didn’t feel it was the right time to attempt to explain the path of her cancer and that it will lead to death.  I think everyone has the right to embrace illness and death at their own pace and I think Maryam will come to that in time.  So Wednesday was a very emotional day for me because we talked about the “valley of the shadow of death” and that is never easy.  Thursday was a much easier day and we talked about some fun things.  I am amazed at how universal conversations are for women and how much fun it is sitting with Maryam, Nabila, and Margaret laughing and sharing our lives together.”

Near La Honda – looking down on the fog

 

Morning fog, Denver Airport, Bolinas, waking, sunset

When it’s not too cold, we leave both bedroom doors open – “two door nights.” There are no screens, and it’s a very nice way to sleep, with San Francisco and the Golden Gate Bridge sparkling 10 miles away.

Golden Gate from the deck (January sunset)

Daytime view from the bed

Last night was another two door night with the outside coming in to the bedroom, into the temple, through the doors, into the room and the bed and the outside and in the morning, thick fog between the trees and just past the deck railing, and the filtered light somehow so pure on the railing I had to rub my eyes – am I really seeing this – and the fog drifting three-dimensionally across the deck and the curtains stirring and the fog is in the room and we’re naked in the warm bed together.

——

At Bolinas Museum with one of Jean’s pieces

You flew to Denver from San Francisco and I flew to Denver from Dallas. I got on the shuttle bus at the Denver Airport and… there you were! It’s going to be a good trip – and it was!

———

Last week we drove from Berkeley to Bolinas for an opening at the Bolinas Museum – Art We Wear: Culture and Expression 1960s to Now. More northern California magic… windy roads through redwood forests, the Pacific rolling endlessly along. The opening was good, Jean’s work was presented well, and there were friends and colleagues from the Bay Area, as well as many other people.

David Kemp, Jean Cacicedo, and a photo of Charles Kemp (at restaurant in Castro)

———

We were sleeping, with our faces inches apart. We awoke and opened our eyes at the same moment. Oh!

———

Candy texted Jean to urge us to go out to the deck for a great sunset.

 

Endless summer, Wyoming, Colorado, grief, love, camping, road trip

Our “endless summer” started in May 2016, though we didn’t name it until May 2017. 
A small section of a very big sky!

…into Wyoming, highway up and down and around in rolling high arid steppe – lots of sage, scattered livestock, a few herds of antelope, into a fertile river valley with green fields, herds of livestock, the majestic mountains in the near distance, the Snowy Range coming into view, coming closer to Centennial, where Jean came deeper into herself. 

Jean’s work, 1970s
What does it mean to be with a woman like you – who opens me to my tears – who opens me to deep awe and joy. Driving across the Wyoming high country, across the BIG SKY country feeling as if we’d taken something psychedelic – so high and so good. “It’s good to have been high before, because now we know what’s happening now.” 
The dream is reality.

Willows!

In the Snowy Range
You told me I help open places in you – as you help open places in me.
That song you sang – “Wy-Wy-WY-oming.”
We stayed with Helen in Golden and with Kenny and Diane in Silverthorne. Good shopping trip with Kenny. Wonderful hospitality from nice people. Colorado and into Wyoming after a stop at Cataract Lake.

Centennial, Wyoming. Population 270. Jean called the woman who bought her house 40 years ago to see if we could come by and walk past the house to the river. The woman told Jean that she was out of town, but the back door was unlocked, so we could just come on in. And we did. And we walked the 30-40 feet from the back door to the river running fast (we heard a big fish break water). Standing there in the cold rain in this place of tremendous growth for Jean.

In the Snowy Range
We spent the night at the Old Corral Hotel, Peet’s coffee and fruit and yogurt for breakfast in our room. 

The highway (opened yesterday) up out of Centennial into the Snowy Mountains. I first saw these beautiful mountains about 1963 off in the distance on the way to somewhere in Wyoming with my friend, Renn Fenton***. I’ve seen them in the distance 5 or 6 times since; and now, driving into the mountains through pine trees dusted with snow and a little snow on the ground, now more, stopping the car down a smaller side road and getting out to be in the snow surrounded by trees with the snow too deep to walk in. Driving up and up with deep drifts on the side of the road and the snow coming down and at the top of the pass the snow is coming down sideways, stinging our faces – Yes!

The Bighorns

The endless arching of this endless summer from Berkeley to Mendocino to Dallas to Santa Cruz to San Francisco to Vancouver to the golden afternoon of Big Sur to Marcia’s house to Indian Rock to The Temple to Flagging to the Edge of the World, to Yosemite (walking with faeries in the forest) to the beach the seashore the waterfront to La Honda to Esalen(!) to massage class to New York to Spain to our beautiful life in Berkeley to Colorado into Wyoming into the place where Jean became so much and arching across the beautiful Snowy Range! This isthe train. Here is a moment on a Mendocino beach that captures when the endless summer started.

At the beginning of the Endless
Summer – Mendocino beach
Driving out of the Snowy Range it was a short drive to Saratoga, to visit the hot springs there. The Saratoga Hot Springs hotel was overpriced and the restaurant mediocre, but we had a great time along the river and in the room. (More later on the municipal hot springs – a much better option than the “resort.”)

From Saratoga, we drove north – first to Medicine Bow for breakfast with bikers (and not 50 year old divorced guy “bikers” with do-rags) – and onward to the Sheridan area to visit Jean’s friends, Katie and Hal for a few days. We hung out on their ranch, then drove up into the hills, parked, and walked along a dirt road lined with lupines. Hal forged ahead with the dogs (Dan and Marty) and Katie and Jean walked through the lupines and I wandered along in my own world. Lunch was at a café in Bighorn. After lunch we went to a “roping” – a cowboy Memorial Day get-together and a birthday party and so there we were, standing along the corral fence with the “headers” and “heelers” roping the steers and the other people sitting on their horses and a few along the fence.

Sheridan roping
And THEN, it was time for the “boil” – a huge pot of boiling seasoned water, with potatoes, sausage, corn, and shrimp – plus bread and slaw and macaroni salad and watermelon and rhubarb (harvested yesterday) pie and coconut cream pie and a humongous tub of ice cream and nice people – though most are probably farther to the right than I am to the left.
A great Memorial Day.
At the “boil” after roping
Memorial Day 2017
From Sheridan we headed south to Thermopolis for a short time in their municipal hot springs, then on to Lander (home of the National Outdoor Leadership School – NOLS). Good times and good food in this pretty Wyoming town.
We drove the few miles from Lander to Sinks Canyon where we camped in a state park. This was Jean’s first night in a tent in 40 years. Very windy and rained for awhile – a great night.
(“Grief is the final act of love, and recovery from it is the necessary betrayal on which the future depends. There is only this one life, and we are the ones who are here to live it.” From NYT review of Option B: Facing Adversity, Building Resilience, and Finding Joy by Sheryl Sandberg and Adam Grant.)

We talk of our spouses and the terrible grief. Driving up the highway across the Wyoming steppe and through the mountains, singing Grateful Dead and Beatles songs together – Here Comes the Sun! Such an emotional trip. Tears just beneath the surface… Attics of My Life – not about a person as much as self… attics = past – I laughed with delight.
In the tent

Onward back across this magnificent big sky country to Saratoga, where we stayed in Hacienda motel on the edge of this small town and drove five minutes to the municipal hot springs – free, sandy bottom, convivial scene. Back at the cowboy motel we rested then went to the Wolf Hotel for a prime rib dinner.

Vedauwoo campsite

Continuing south we again camped, this time in the Vedauwoo area – we had a great campsite among the hoodoos. Our nearest neighbors were a hippie family on their way to the Rainbow Gathering in a great bus. The man and I were talking about an Incredible String Band song quote on the side of bus (“We love you, but Jesus loves you the best”) and he and I sang a few lines together. Later I recalled that I sang that song to Keo as she was dying last January.

Camping with Jean was great. We were comfortable in our warm sleeping bag and tent, enjoyed our camping food, and had good times hiking around and watching sunsets.
From the Vedauwoos we drove to Fort Collins to spend the night, but it was too cityish, so we drove into the mountains and rented a cabin along the Fall River in Estes Park. This was a great move – clean mountain air, rushing river, and… a bear walked by less than 20 yards from Jean!!! This happened a day after we talked about our spirit animals (mountain lion for me; bear for Jean)!
Sunset Vedauwoo

In the morning we took off up Trail Ridge Road across the Rockies. It’s been more than 50 years since I was there and Jean had never made it across that pass at 12,183 feet. Wow! Surrounded by tundra and snowy peaks and the thin air and clear skies. Now over the pass toward Winter Park and then Golden to spend the night at Helen’s (and her dogs, Louie and Stella).

Jean and Helen were talking about a car we saw with a bumper sticker – Women for Trump. Jean said, “Don’t they realize their bodies are sacred.”
Denver airport and flying from one paradise (Wyoming/Colorado) to another (Berkeley/Bay Area).
Bear outside our cabin. Photo by Karen

*** Renn Fenton and I lived together in a cabin in Estes Park and climbed in Estes and the Needles in South Dakota. While Jean and I were traveling in Wyoming and Colorado, I told her a little about Renn. When we got home I googled him. I discovered that he died in 2007. Here is something from an internet forum: “I am a travel nurse who has taken care of Renn while he was in the hospital. I wanted all of you to know that I have felt privileged to be one who got to spend time caring for Renn during his last days. It was clear to me the first time I laid eyes on Renn that he was quite a character – when I googled him, I found this site and saw a comment that made me want to respond. I was actually able to “break through” with Renn and get him to talk back to me and say my name. I will forever remember his vivid blue eyes and “cat that got the canary” smile. I just wanted all of his friends to know that there are several of his nurses who have appreciated Renn for being the kind of person who makes this world interesting and feel honored to have cared for your friend.” 

Renn’s country – Jean’s country – my country