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.

Dancing at Flagging, on the train, congruencies

May
Jean at Summer of Love installation at de Young Museum
Temple door

Jean and I and David and Charles went to a party with about 200 people in a meadow in a park on a beautiful Sunday (Mother’s Day) afternoon. (This is the same meadow where David and I had scattered Leslie’s ashes.) Today, the music was feel-good EDM and we were feeling good, feeling an irrepressible urge to dance – so there we were, dancing at the edge of the meadow, then into the forest, back into the meadow, and into a redwood grove. Yeah, this is the way it should be. I danced with Jean, her friend Courtney, my son, my son’s husband, and random people. It was more “cozy” (as Jean said) than euphoric. We enjoy open and intimate connections every day, and a fair amount of magic in our daily lives – we talked about how this day and its magical experiences are part of living the dream; about our shared commitment to that reality. We walked out of the park, Uber to train, and train home. Really tired the next day, but felt good.

~ ~ ~
Uncoupled couple on the train. Riding the N Judah train from Embarcadero to Duboce Park. A couple got on and stood, each one at opposite sides of the door, standing facing away from one another, staring with flat affect into their separate spaces, never speaking, just staring, unhappy looking.
This is the train – better to be alone with one’s memories I think, than uncoupled like that.
David at Flagging in the Park party

This is the train – riding through/within each precious unrepeatable moment.

This is the train – I want you to put on your pretty summer dress.
This is the train – face time, our faces inches apart, holding you, watching you fall asleep, watching you sleep, forcing myself to stay awake for each precious unrepeatable moment in the firelight, in the dark, in the light.
This is the train. 
~ ~ ~
Lunch with David, 3-4 days/week. How sweet is that! 
~ ~ ~
Jean and I talking of our beloved spouses.
~ ~ ~
Stairs in Berkeley home

Hippie Lady. Our home is sacred space. Living consciously. Flowers everywhere inside and outside the house. Uncomplicated relationship. Free. Lying together, face to face, looking into one another’s eyes – our “face-time.” Recognizing the magical moments of congruency.

~ ~ ~
I discovered that you were making notes about our relationship. And they were the same sort of notes I was making! Things that we both love or congruencies or similarities…
In common/likes/congruencies
Dogs
Creating – art (JC) and hospice (CK)
Being outside
Nature
Sex
Love – loving and being loved
Oh yeah – Jean in redwoods in AIDS Memorial Grove

Grief

Rock and roll
Dancing
We’re alive!
Feminism
Practical politics
Fairies
Walking
The Bay Area, especially Berkeley
Pleasing the other
The importance of the relationship – recognition of the beauty
Working on the relationship
Romance
What we see as beautiful
Travel
Sunsets
Celebration of hip culture
Living fully/following our dreams/visions
Van
Respect
Acceptance
People (JC) – Humanity (CK)
CK in garden in Berkeley

Art (JC) – Service (CK)

~ ~ ~
Dallas: Humid warm night with the fragrance of old fashioned four o’clocks heavy in the night.


–>