End of life

I found some photographs

Clearing out a drawer
I found a few photographs.
There were some good ones
And I stuck them in my suitcase.

Among them were photos of Leslie, Pov Lon, David, and Keo on the front porch; my Mom/Grandmother Mary and David in our kitchen; Leslie and Baby David; and David and his siblings.

I looked at these pictures of life and I realized I’d helped take care of four of those people in the last days of their lives. My Mom, Leslie, Keo, Phana. What sadness. But I’m glad there were not more than those four. Here they are with some of the photographs.

Photo: Leslie, Pov Lon holding David, Keo on the front porch (Keo and Lon had been in a war, concentration camps, and refugee camps until about two months before this photo was taken)

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My Mom I’d known all my life. She was about 70 when she died in the cottage behind Leslie’s and my house. David, Leslie, John, and I were with her every day. John and I were with her when she passed sometime in a long night.

When she was first diagnosed with small cell cancer of the lung I worked to understand the natural history of that disease. I mapped the likely metastatic pathways of her specific tumor type and the manifestations of metastases so that I could be sure to prevent or treat early any resulting problems (like hypercalcemia or spinal cord compression) or at least understand those problems. That became the basis of a book on end-of-life care in which I mapped the 18 most lethal tumors and associated problems.

A month or so before she passed, my Mom and I journeyed together. Among the things that happened that day (What a day!) was that she forgave herself. After that her pain lessened and her suffering was much less – all the way through to the end of her life.

How my Mom died: http://ckjournal.com/how-my-mom-died

Photo: David showing his Grandmother how to play golf

—————

Leslie and I were together for nearly all of the years since we were 16. She died in my arms at Baylor Medical Center.

In Leslie’s last month I would read to her when we were in bed – first from my blog (the traveling parts), and when that became too difficult for her to track, I would read from Little Golden Books and similar books I had stored in David’s closet. I realized that everything I read was related to going home, finding a safe place, and the like. Books I read to my sweet Leslie included:

Melanie Mouse’s Moving Day
The Fuzzy Duckling
The Shy Little Kitten
The Pokey Little Puppy
Home for a Bunny

Once when I was in David’s closet looking for another book to read to Leslie I saw a book titled, These Happy Golden Years. I burst into tears.

From my journal: Dying is often not easy. These were hard times for her. She underwent profound changes starting at almost exactly 6pm that last (Thursday) night. She went to surgery about 1:30am Friday morning and she passed away back in her room surrounded by pure love about 4:30am. (I’m actually not clear on times, and maybe even days.) I was with her, embracing her, whispering words of love, of remembrance, people she loved, people who loved her, the Song of Ruth…

We are fulfilled. Nothing is undone between us. We have loved and been loved, lived our beliefs, had a happy home, had a beautiful son, had a grand partnership with one another, had many adventures, and so much more—really, it’s been amazing!  

Photo: Leslie and David

—————–

Keo I’d known since she was about 10, when she and her Grandmother lived with us for a few months in 1985. When she became so sick with cancer I went every day to Keo’s apartment. It was a hard time. Keo was ready to die, but nobody in her family was ready for her to go. She begged to die. I spent time with her and her husband and mother on her last day. She was 39 when she died. A few days before her passing I sang this song to Keo:

Keep on walking where the angel showed
(All will be One, all will be One)
Traveling where the angels trod
Over in the old golden land

In the golden book of the golden game
The golden angel wrote my name
When the deal goes down I’ll put on my crown
Over in the old golden land

I won’t need to kiss you when we’re there
(All will be One, all will be One)
I won’t need to miss you when we’re there
Over in the old golden land

We’ll understand it better in the sweet bye and bye
(All will be One, all will be One)
You won’t need to worry and you won’t have to cry
Over in the old golden land.

(Robin Williamson)

Some of Keo’s gripping story is here: http://ckjournal.com/keo

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Phana (David’s sister) I’d known since she was four. She was in her 30s when she passed. I took her to chemotherapy almost every week in Dallas and in Houston, to other appointments, and we hung out with David, Charles, and John in San Francisco. We spent many hours together in the car, infusion room, and elsewhere. We shared a lot. When she was close to dying, I thanked her for helping me through my grief from Leslie’s passing. Phana understood immediately. She died right around Christmas while I was in Berkeley.

Photo: David, Chhouen, Phana, Soda in front of our house

Once John and Phana and I were at the corner of Judah and 9th) in San Francisco and Phana was vomiting in the gutter. In just moments a young woman from a clothing store across the street came over with a bottle of water. After Phana passed, I went to that store and thanked the woman. I’m still thankful for her

————–

“I’ll try to be around and about.
But if I’m not,
Then you know that I’m behind your eyelids,
And I’ll meet you there.”

(Terence McKenna)

Tribute to Laura Neal-McCollum

Laura Neal-McCollum: She was the first hospice social worker in Texas and one of the first in America. She created a path through cultural, racial, medical, funding, and other wildernesses at the literal edge of human existence.

She gave me the record of the music (Pachelbel’s Canon in D) we played on breaks in the first hospice training sessions at my house and at Cliff Temple Baptist Church. We were finding our way in uncharted waters and Laura was walking point. Some memories of things I know she did…

There was a woman dying from cancer (all of our patients were dying from cancer) who was still feeling sexual despite a large purulent abdominal wound, weight loss, pain, etc. In the course of conversations with Laura, the woman said something about black or red satin sheets. Our way was clear. The nurse working in that team taught the woman how to put on a secure dressing that the exudate wouldn’t soak through. The rest of us took up a collection for the satin sheets. The woman and her man had sex on the satin sheets and the dressing didn’t leak. That was the way Laura was.

An old man was dying. I remember him as severely jaundiced. I remember sitting on the front porch of his little frame house in Oak Cliff. He lived with a lady who gave him beautiful care. His worthless relatives started showing up, usually fucked up in one way or another and talking about getting his life insurance. Laura got an attorney (Sister Rosemary) from an advocacy group to get his affairs in order, in particular insuring that his money went to the lady who cared for him. The lady got everything – $14,000 – and his relatives got pissed off, and he died knowing that he’d done the right thing.

Laura enlightened us to the reality that we were doing nothing less than birthing souls from this life to the next. She explicated that concept to us. This was in 1978. Today, so many years later, people are talking of “end-of-life doulas.” That’s what I’m talking about when I say that Laura showed the way into and through the wilderness.

Laura Neal-McCollum gave us a lot. Thank you, Laura.

Progressive dementia: addendum to advance directive

This document is intended as an addendum to one’s advanced directive. It will be repetitive to some extent in terms of an existing directive, but there is some unique material and it adds detail to some issues, e.g., what medications to continue and what medications to discontinue. It can easily be modified to include person-specific wants such as being given alcohol or cannabis (when and how much) throughout the illness.

In a complex healthcare system, with so many players involved, it’s easy for treatment (especially emergency or from an unfamiliar provider) to spiral out of control with tests leading to decisions and treatments and subsequent tests and more treatments, and so on. The core idea is to maintain control over one’s life and death – because someone will control the arc of our illness, and for most of us, it’s better to control (as much as is possible) our own destiny.

Happy Trails to us all!

——————-

There are several things I fear, among them dementia, CVA, and neuromuscular diseases such as ALS. None of these seem imminent, but one never knows!

If I am diagnosed with dementia not explained by delirium or major psychiatric disorder, my Advance Directives and/or Living Will will reflect the following:

Mild dementia

If I am mildly demented as discussed/defined below, I want my agent (—-) to establish a DNR status for me.

Mild dementia discussion/definition: objective evidence of low performance in more than one cognitive domain that is greater than expected for my age and educational background; significant interference with the ability to function at work or at usual activities, but still able to carry out basic activities of daily living (bathing, dressing, personal hygiene) and participate in some pastimes, chores, and social functions; evidence of significant difficulties in daily life that interfere with independence (Knopman and Petersen, 2014).

Note that mild dementia is not the same as mild cognitive impairment.

Moderate dementia

If I am moderately demented as discussed/defined below, I want my agent to discontinue routine medications EXCEPT medications improving comfort and quality of life. Currently, medications to continue if I am moderately demented include —-. Medications such as cholinesterase inhibitors may be given to improve confusion, communication, or memory. Currently, medications to discontinue would include —-.

If I am moderately demented I want my agent to discontinue routine doctor or NP visits, antibiotics for infections, and all life-prolonging interventions.

As a general rule in this and other end-of-life health matters, if I am experiencing agitation or increased anxiety, I would rather be sedated and not distressed than alert and distressed. Cannabis should be given for a good trial for agitation or increased anxiety before using pharmaceutical medications.

Unless I explicitly request any changes, I want to be given cannabis daily according to a schedule that I will give. Vape or pipe is by far the preferred route. If smoking is not possible, cannabis should be given via oral/edible route.

Moderate dementia discussion/definition: objective evidence of difficulty concentrating; decreased memory of recent events; increased difficulty managing finances or traveling alone to new locations; increased difficulty completing complex tasks; withdrawal from friends or family because of difficult socialization; require assistance in bathing, toileting, or dressing (Dementia Care Central, 2018).

Severe dementia

At the first signs of severe dementia as discussed/defined below, I want to be admitted to a hospice or palliative care program at the earliest opportunity. I want a plate of food to be placed in front of me at mealtimes, but manual or parenteral feeding should be discontinued unless I explicitly request it. No intravenous fluids are to be given. I want to be allowed a natural decline and death (Kemp, 1995).

IF I am able to swallow, medications should be continued as discussed under moderate dementia.

Agitation or increased anxiety should receive ongoing medical attention. I would rather be sedated and not distressed than alert and distressed.

I want to be given cannabis daily according to the schedule I will give. Vape or pipe is the preferred route, though oral may be necessary.

Severe dementia discussion/definition: incontinent of stool in the absence of GI infection, unable to walk alone in the absence of injury or disease unrelated to dementia, have speech limited to a few words/day, experience delusions and/or hallucinations, unable to recognize my immediate family.

Thank you and blessings upon all who help me on my journey.

References

Dementia Care Central (2018). Global deterioration scale. Online. https://www.dementiacarecentral.com/aboutdementia/facts/stages/

Harrington, S. (2018). At Peace. Grand Central.

Kemp, C.E. (1995). Terminal illness: a guide to nursing care (2nd ed.). Lippincott.

Knopman, D.S. and Petersen, R.C. (2014). Mild cognitive impairment and mild dementia: a clinical perspective. Mayo Clinic Proceedings, 89(10), 1452-1459.

 

It’s a hard road, there are times, hippie dream

It’s a hard road, daddy-o

Big Sur

The final psychosocial crisis of life is ego integrity vs. despair. Integrity is “the acceptance of one’s one and only life cycle as something that had to be” (Erikson, 1950) and also “a sense of coherence and wholeness” (Erikson, 1982).

Shower under the redwoods and oaks in Big Sur

This final stage may be considered as a process of integrating (or not) one’s life circumstances, experiences, and decisions. The positive outcome of the process is integrity, acceptance, wisdom, and wholeness. The negative outcome is a sense of despair, meaninglessness, or hopelessness

To the preceding I would add the question of how am I living my life right now? Again and always, this is seen in the context of personal challenges and circumstances. Doing the best we can under the circumstances. And here is the thing: it’s not too late!

It matters how

Big Sur

we have lived and how we are living. That’s obvious, but how often have I forgotten the things I always knew?

I’m talking about despair as a life theme or outcome vs. a period or periods of despair.

In the past week three people I knew died and two others are in life-threatening situations. Sadness in their families and among friends, and powerful reminders of the fragility of life and the importance of living well however one might define well.

——————–

At Abiquiu Inn

Related thoughts: we reach a point in life where the inevitability of personal mortality becomes reality vs. an abstract issue, the deaths and other losses begin to pile up, and this question becomes central to the aging experience: how did I live my life? Was my life meaningful?

How did I do in relation to what might have been, i.e., to what extent did I or did I not waste my life given whatever unique challenges existed for me?

(And remember, there are times when doing nothing is something worth doing.)

Generally, people think of this stage of development related to aging, but it also applies to younger people at the end of life, or really, if you think about it, it also applies to significant loss.

Dining room, Big Sur

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Psychosocial stages and crises are based on Erik Erikson’s work. The quotes from Erikson are from McLeod, S. A. (2018). Erik Erikson’s stages of psychosocial development. Retrieved from https://www.simplypsychology.org/Erik-Erikson.html

—————-

There are times

There are times I’ve forgotten

And times I’ll never forget.

At the Agape Clinic about 2006

There are times I’ve known glory,

And times I’ve fallen to the floor in agony.

Times I’ve been kind,

Times when I’ve been cruel.

Times when I’ve stumbled along alone,

And times when I’ve been carried by the love of others.

Big Sur

There are times when I’ve told nothing but the truth,

And times I’ve lied.

Times when I’ve been brave

Times when I’ve been afraid.

Loved.

Hated.

Times for everything under the sun. Mostly love, I think.

—————-

Hippie dream…

Strong dark coffee in the warm bed, making love in the soft morning light.

The view from our sleeping bag, Big Sur

Peaches, cherries, melon, strawberries and yogurt with toast and almond butter for breakfast. Harvesting chamomile flowers from the garden, the flowers drying along with the peppermint, lemon grass, and colas. Sitting on the deck, birds flying by – some above, some at eye level, and some below. The Bay and golden afternoons. Mystic art happening in the house – “Stories about images collected from journeys both physical and spiritual.” Our home has fragrant gardens in front and in back. It has a vibe like CSN&Y’s Our House. We’re in a city full of gardens like I’ve never seen before – a city of flowers. David was here for lunch yesterday. He worked

From the deck

for awhile. Good times! Chris sent a box of cherries from her orchard. I baked four cherry galettes and gave one to our new neighbors. Yes – we’re living a hippie dream and it sure feels fine.

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

 

 

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

 

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
 

New York opening, reception, walking in NYC, dinner, Hoboken, Red Book, Austin and Waco

Jean’s work on right; her friend, Janet’s on left

We went to an opening featuring one of Jean’s pieces at the Museum of Arts and Design in New York. We got there a little late (straight from flight) and Jean went in to the museum to find out what we could do with our packs, etc. While I was outside the museum with all our stuff on the sidewalk, one of Jean’s friends took a fall in the doorway (thanks to an impatient person pushing past him). His hip was fractured in the fall/the shove.

Inside the museum it was a scene – lots of people, some of Jean’s colleagues, friends from Berkeley and San Francisco, artists, some people wearing art clothes, some people who’ve been around for awhile, like Fayette from the Cockettes (https://en.wikipedia.org/wiki/The_Cockettes). A nice time. I enjoyed seeing Jean’s work and other pieces, like Wavy Gravy’s jumpsuit, a dress by Gretchen Fetchen, and other “hippie couture.” (Who would have thought that there would be hippie couture – but there was and is.)
We met Jean’s sister, Susan, and her husband John at Eately for a good Italian swordfish lunch. It was wonderful to meet Susan and John.
CK, JC, DK, CB at reception

 

Highlight: David and Charles came to NY for the opening and had a lovely champagne reception for Jean in their suite at the W Hotel. What an affirmation for Jean, for me, for our relationship (including the relationship between David and Jean; between all of us – Jean, David, Charles, me). It was a beautiful time!
Jean Cacicedo: art is not for judging – look – like – don’t like – no difference.
At NYU gallery

Jean and I walked for quite a ways in the city on a cold, cold day. Wonderful coffee shop at Highline Hotel, cold streets, a walkway where an El had been, so cold – “I’m so high!” “Life is too short to be anywhere but here.” On to Greenwich Village, walking along the 4th Street of Dylan’s Positively 4th Street. On to the Stonewall Inn where gay people took to the streets/rioted in the battle for liberation. On to Washington Square and NYU’s Grey Gallery featuring work from avant-garde artists and galleries from the 1950s and 60s. On to meet David and Charles back at the Stonewall Inn for a glass of wine and on to dinner at Chumly’s, an old speak-easy where Hemingway, Anais Nin, F. Scott and Zelda, Steinbeck, E.E. Cummings and a host of other writers hung out. We sat where Simone de Beauvoir sat.

We caught a cab back to the hotel. The driver was driving aggressively and hit another cab a glancing blow (NY, what an aggressive place). When the guy pulled over so he and the other driver could jaw at one another we all just got out and walked away. In a few minutes the guy drove up next to us, wanting money. We gave him the approximate fare and moved on.
Wanderweird’s work

From my notes: we made love in the morning and again at night, then lying in bed singing Van Morrison songs together. I held her and Jean cried for joy; we cried for joy.

More notes: at the Highline Hotel coffee shop I was suffused with gratitude – “This is the only way to live.” When I’m really old, read this to me. Remind me that I lived as fully as a person can live. I’ve loved and been loved by two incredible women (a warrior princess and a shaman princess – really). I’ve laid in warm beds and traveled the world and looked upon my son and practiced mercy and walked in misty gardens and run across the fields and made love in the meadow and danced in the sun and under the stars and so much more. I’ve lived and loved and been loved.
CK, beast of burden at NYC Port Authority

More notes: at the Grey Gallery there was a window full of post-it notes. Jean took a random photo and later when she enlarged the photo, here is what was in the center: “… the greatest of these is love.”

Saturday morning we packed, I went up to say goodbye to David, we took a taxi to the Port Authority, then bus 273 to Hoboken, and got off almost directly in front of Jean’s niece Anne’s women’s clothing store. Anne’s son, Arthur, and Jean and I walked down the street to a Cuban restaurant where we had a lot of food and fun. After lunch, Jean caught a bus back to the store and Arthur and I went to a grocery store, then started the trek back to Anne’s. It was 19 – 19! And we were freezing. I was carrying two bags of groceries, no gloves, and my coat wouldn’t stay buttoned. Nevertheless, we had a great time, laughing along the sidewalk and Arthur talking about his Dad.
Back at Anne’s store we went for another walk, this time to Anne’s home a few blocks away. Arthur took Jean and me up to Anne’s room on the third floor of her three story brownstone. Cool. We’re in Hoboken now! Then Beatrice, Anne’s 6 year old daughter, and Anne came home, and then Keith, Anne’s BF. Nice dinner, good times.
Jean and Beatrice – Hoboken

Sunday we had what I call “a Berkeley breakfast” of fruit, yogurt, and toast and nut butter. Then a great trip to the grocery store for Jean, Beatrice, and I to buy chicken for Jean to grill and supplies for me to make pear tarts.

When you hear the music
Ringing in your soul
And the feeling in your heart
Just grows and grows
And once again, I’m ready to die, complete.
I baked the tarts with frangipani – oh man, so good. I felt happy and homey with the children and baking and Jean and Anne and Keith. Jean grilled chicken and we fixed salad for another nice family dinner.
And I realized this was March 5, the second anniversary of Leslie’s passing. I thought it was 3/3 at the latest. Two years. Waves of sadness. Ahhh, Leslie, you’re always with me in my heart. You’re my reference. Anne said, “Are you okay?” “No.” I went up to our room and sat and felt and thought back on those last difficult, beautiful months and the beautiful years that went before.
By Wanderweird

In the morning we had breakfast and finished packing. Good Lord, how did our stuff get up the narrow staircase to the third floor! Walked back to Anne’s store, and Jean and Anne went somewhere while I took a nap on the couch. Lunch at the Cuban restaurant, Uber to airport, and we’re off to Barcelona.
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From notes made a month or so ago
I looked for this book for a long time in the 1970s-1990s, but it still had not been published. A few evenings ago, we were in a small bookstore in Berkeley, and I asked the owner if she had any books by Jung. She said, “Yes. Would you like to see the Red Book?” “Yes(!!!)” And so she brought out this “reader’s edition” of the fabled Red Book (written between 1913-1930) – the basis of Carl Jung’s later works/his life’s work. Later she went into the back room and brought out a copy of the big original, complete with Jung’s paintings and drawings. Wow!
On the way from San Antonio to Austin (thanks Barbara, for the comfortable hospitality and fellowship!) to Dallas, we stopped in Waco to visit the Baylor campus for about an hour. Jean got a phone call from her sister and we stopped for her to talk. She sat on the grass to talk and I and I lay down beside her enjoying the sun and watching students and faculty walking by (I was on the Baylor faculty for 20 years). Later we realized that the whole time we were there we were the only people we saw sitting or lying on the lawn/commons. This, on a class day, on a warmish (50s-60s) spring day at a big university. My oh my.
Somewhere else, someone said, “I need to love: I need to be loved.”