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.)

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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.

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