Another week in Berkeley, 2024

From the bedroom – the Today Show!

I was listening to the Van Morrison song, And the Healing Has Begun. The song resonates powerfully with Jean and me, in part because it was in our life together that the healing from our spouses’ deaths really began – and of course, thanks to David and John and Jeff and Janet and Susan and Sherry and others for keeping us pretty well until Jean and I met. Among the lines in that song that resonate most powerfully are:

We’re gonna stay out all night long
We’re gonna dance to the rock & roll
And then we’re gonna go out and roam across the field

The last time we stayed out all night long (other than at a hospital, LOL) was in 2018 when Jean and I were at a psytrance event thrown by the collective (Atrium Obscurum) that I’d been part of previously. It was a three-day, two-night party, but we were only there from Friday afternoon – Saturday morning. We worked the gate Friday evening (my last work with Atrium Obscurum) and hung with friends and then Ro’s Rage Against the Machine cover band played and then the opening ceremony and then the dancing began. We were awake through the night in our forest campsite, sharing words of love, kissing, making love while the music pulsed and people laughed and danced in the forest and over on the earth dance floor under the trees all through the night. In the morning we went to the dance floor, then to a yoga meeting with Kristina, and then we went swimming at the nearby spring-fed Lake Daingerfield. It was all magical…

At psytrance party

We’re gonna stay out all night long
We’re gonna dance to the rock & roll
And then we’re gonna go out and roam across the field
The music was psytrance instead of rock and roll and we swam in the cold spring waters instead of running across the field, but it’s all the same.

——————-

Searching through my blog for something related to Van singing And the Healing Has Begun I came across one loving post after another. Really a lot. Oh, the magic of our life together – where the healing really did begin! I’m awed by our reality then and now. I am so grateful to you, Jean. These days we sit naked in the warm waters of our hot tub with the moon shining, an owl hooting off to the north, and The City all lit up in the distance. What a time we’re having.

I found posts from 2017 and 2020 with the same title, Another Week in Berkeley. So here comes yet another week in Berkeley from now:

Tuesday, 2/13

Hot tub at sunset

We’re still chugging water to start the day, snack, meds, then our very own “Today Show” – what we see from our cosy, warm bed looking through the bedroom doors across San Francisco Bay, the Marin Headlands, Golden Gate Bridge, sky, clouds… talking, coffee, massage, .

We’re still having fruit salad most days for breakfast: today it was pear, strawberries, blueberries, a little apple for the crunch, yogurt, maple syrup, toast, almond butter. After breakfast we had a soak in the hot tub (more on that in a moment).

Jean went to the dentist and I went to a Pilates session with Sandra. A few months ago Peter N-R gave me a session with her (Thanks, Peter!) and I’ve been going back weekly since then, except when I had covid.

We exchanged Valentine’s Day cards (more words of love). Jean and I fixed dinner: scallops in a simple, deep sauce with pasta and brocolinni.

Wednesday 2/14

Jean made this Valentine’s Day card for me

Another day in Paradise, starting in the bed with meds, snack, mate, and the Today Show. First thing in the morning, hummingbirds fly straight up high in the air before they zip off to somewhere. There is a willow-related tree growing below our house and the top of the tree is eye-level for us. Hummingbirds like to perch on the very tip of the tip-top branches like little kings of their demesne.

Breakfast this morning was a “giant cookie”: oatmeal with strawberries and blueberries, Jean’s with butter and mine with almond butter, maple syrup, milk. As always, we ate together in the living room.

Afterward I drove to Solano Avenue, parked, and walked way down the street, then back up the other side, then to Peet’s, and then Andronico’s for strawberries, milk, and King Arthur flour.

After lunch we took a nap, then Jean went to Freida’s for haircut touch-up.

Exercise

I walked up to the Kensington market for ground beef and Jean fixed meat loaf, mashed potatoes, and broccolini for dinner, accompanied by Levain from Acme Bakery.

Since the pandemic began we’ve been watching television for an hour every night. Tonight we watched Sol Life on YouTube (the day-to-day solitary life of a woman in Japan) and part of a romantic comedy.

In the front garden

Thursday 2/15

Snack, water/electrolytes, meds, Peet’s for me and herbal tea for Jean, Today Show.

Hot tub, breakfast (kiwi from tree at Lisa’s studio, Asian pear, pear, strawberries, blueberries, banana, yogurt, toast and almond butter, granola).

I drove to the Berkeley Kaiser Permanente pharmacy to pick up Rx, then to nearby Berkeley Bowl for groceries. Home.

Lunch

Nap

Jean was in her studio in the late afternoon. I did Pilates exercise, went for a walk.

Jean fixed dinner – minestrone and I helped with prep and cleaned up.

Read

Friday 2/16

In the Today Show, huge fog banks covered most of the mountains/headlands so that it looked like big mountains in Colorado. We talked of the challenges we all face at this age, some of us more than others of us, some physical, some psychological/emotional, but all of us dealing with something significant.

Where we camped at psytrance party. Mid-left is the hard-to-see-in-the-day suspended heart that lit up the night.

We took a short hot tub.

Breakfast was (for Jean) smoked salmon on toast + fruit salad (Asian pear, pear, strawberries, blueberries, orange) and for me the same fruit salad with yogurt + toast and almond butter.

Jean went to the middle school pool for water walking with Janet and then a quick stop at Trader Joe’s. I walked up the street to the “top of the hill” and back down (~2,000 steps), then Pilates exercise.

Lunch was meat loaf, mashed potatoes, cheese, salsa sandwich for me and salad for Jean.

Nap, talking under the covers.

I made granola and Jean fixed a salad to go with the minestrone when Janet and Larry come over later.

Enjoyed judgment against Trump. I’m enjoying it very much!

A fence along where I walked

Had a nice Shabbat dinner (minestrone, salad, cheese with tangerines and chocolate for dessert) and fellowship with Jean’s oldest friend and her new partner, Larry. He says it’s a miracle to have this connection with Janet at this age. I concur – we’re all living a miracle!

Easy clean-up since most of the cooking done yesterday.

A TV show that once again showed that it’s a vast wasteland out there.

Sleep.

Saturday 2/17

Coffee, snack, meds, talk, Today Show, watching the sky transition from grey to pink to cloudy to clear, . Hot tub.

Fruit salad, granola, yogurt.

Jean watching a podcast on Egyptian textiles and I’m writing this and reading more about Trump judgment. Got a text from Linda B: I’m going to sit for a portrait with her art group soon.

I’m problem solving re portable speaker and Jean is in her yoga room, then studio.

Lunch: another meat loaf sandwich for Mr. Adventures!

Stone wall, moss along where I walked

Nap together, lying in bed (again) talking.

I spent the rest of the afternoon writing, reading news feeds.

Jean was in the studio late afternoon, then came upstairs and fixed broiled salmon, salad, Acme levain.

Watched part of a French movie, L’Envol (Scarlet) – pretty good.

Slept.

Sunday 2/18

Coffee, snack, meds, talk, . Hot tub.

Dishwasher not working, so we unloaded a full load and started washing dishes.

I fixed omelet with goat gouda cheese, mushrooms, green onions, levain, ½ sweet Italian sausage each for breakfast.

Washed dishes.

Talked with someone on the phone regarding how to prioritize and coordinate medical care with a spouse. Wrote f/u text.

Jean in India about 10 years ago

Hi ——–,

In summary, the main problems that should be addressed quickly are:

Nausea and vomiting AND subsequent dehydration. There is an effective nausea medication (ondansetron) and he should have some at home as well as when in ER. There’s a good chance he’s dehydrated and in need of IV fluids now.

Pain – probably needing more than Tylenol or ibuprofen. Note that ibuprofen should be given with food to avoid stomach upset.

The past problem with ER should not influence you to avoid seeking care. They’ve already tried to make it right and may have to try more, but you should still go. You can also go to a different hospital. You should stick with him at ER to head off conflict.

The prostate and back are probably not priorities right now.

Wishing you and ——- well.

Charles

Went to MLK middle school track and we (or mostly Jean) walked with Susan. I’m using my iPhone to keep track of my steps these days. Most days I exceed my target.

Trader Joe for several things, including TJ salads for lunch

Lunch

Sunset from deck

Finish washing dishes

Nap, talking about life, including Jean’s friends M and V who recently died in their 90s, died within a few hours of one another, and lived independently and well in their house in the Berkeley Hills until death. There are many sad and even desperate stories happening among older people, including people we know. It’s well to remember M and V whose story is a triumph. And Jean’s friend, K, in her 90s, still in her home (with a fair amount of assistance). H and J, late 70s and early 80s, living in wooded hills near Point Reyes, growing quality cannabis. C and J, in their mid – late 70s, dealing with significant physical issues and living a beautiful life… We joined Ashby Village last year. Ashby Village is part of the village movement happening here and elsewhere. Through members and volunteers members work to remain in their homes as they age.

Talked with David.

Pilates exercise.

Writing this…

Fountain near the house

Reading news feeds. I read a lot of news. I think things are pretty horrible for many people around the world. I worry about the wars in Ukraine and Gaza. The news in the US, especially political news, is weird and unsettling. I’m unsettled.

Jean in studio.

Dinner was salmon in Indian curry paste (Sukhi’s brand) in coconut milk, cauliflower, slaw

Reading in living room, then taking a soak in the hot tub.

Watched movie, Scarlet) for an hour. Goodnight…

Monday 2/19

I woke up early and got up to write something re a neighborhood issue (whether the neighborhood forum is an appropriate place to discuss a petition to recall our county DA). Here’s what I wrote:

Reflecting on the question of politics entering this neighborhood discussion group, I see with greater clarity how much public safety and health are enmeshed in politics.

For me, personally, as I age and my physical abilities decline, a completely non-responsive Berkeley/Alameda forces me to live with a cracked, uneven sidewalk in front of my house (only one fall, so far) and a shameful lack of bus benches for impaired AC Transit riders like me. Because of so much urine on downtown sidewalks, I had to spread newspapers on the sidewalk to sit when I was unable to stand while waiting for a bus. Like crime, these are public health/safety issues and any solution to them will include politics.

I appreciate the opportunity to step out of my kitchen door to sign a petition to recall. I felt no pressure to sign. And I don’t feel there is a risk to neighborhood cohesion or relationships related to this discussion!

Fixed coffee, snack, meds, lay in bed talking, .

Oh! There’s a rainbow over The Bay!

Hot tub

Fruit for breakfast: Asian pear, pear, grapes, blueberries, strawberries, apple

Worked on medications

Installed color toner cartridges in color laser printer. I am smrt! I am smrt!

Night sky

Lunch: granola for me, smoked salmon and goat cheese for Jean.

Nap

I did a lot of nothing from 3-5:30, then to Sol’s for dinner. Sabich sandwich for me, mesquite smoked trout for Jean. Best trout since I lived in Colorado. Jean agreed.

Hot tub.

I chose the evening’s entertainment: Seinfeld and Young Sheldon.

It rained during the night.

That’s another week in Berkeley.

About the hot tub: I gave Jean a hot tub (or spa) for Christmas and she paid for retrofitting the deck so we could have the tub on the same level as bedroom and living room. It’s exactly 20 steps from the tub to the shower. Nice! Thank you, Sweet Thing!

Highway from Marathon to Big Bend. We’ll be on that road in a few weeks on our trip to Marfa and Big Bend

She called just to say goodbye

I used this in hospice training in the late 1970s. It is the profound universal message of our common human need for witness to our lives and to our deaths. It is the same message that Jesus gave when shortly before he was tortured to death, he said, “My soul is very sorrowful, even unto death; remain here, and watch with me.”

SHE CALLED JUST TO SAY GOODBYE

By Lynna Williams

Star-Telegram Writer

In a long and good life, she married the man she loved and together they loved two sons. Now she is dying and who will hear her goodbyes?

Not her husband or her sons. The oldest son died in the France of World War Il two days after his last letter arrived safely home. The youngest was buried next to his father in a Fort Worth cemetery.

Not other family. She came to her marriage from life as the adored only child in a West Texas home. Mama and Daddy died within a year of each other 48 years ago.

Not friends. Those who meant something to her are dead, their obituaries neatly clipped and filed in a front room desk.

But, although she is alone, she wanted to say goodbye. She wanted even more for someone to hear. The voice that called the Star-Telegram newsroom Tuesday was somewhat hesitant but firm about the purpose for the call: She had something to say. Could someone listen?

Assured that someone could, she began to talk. Her name wasn’t important, she said. Her need for a witness to her life — even a stranger — was.

She was born in Abilene 81 years ago. Nothing has ever come between her and memories of the house where she grew up, not distance and certainly not time. She can remember it now as clearly as if she stood on the freshly painted porch. She can see the oak tree where she played and where folks gathered on Sundays for prayer meeting.

Her husband-to-be was a boy of 16 when they met at a girlfriend’s house. She remembers betting with the friend — a daring act for a gently brought up girl — that he would marry her.

He was over 6 feet tall and when she looked at him, something caught in her heart. She remembers that feeling, too, so clearly that retelling it makes her sound, for a moment, almost young again.

They married and moved to Fort Worth. She hated the town on sight — her husband laughed at her for missing the West Texas “scenery” of Abilene — but she wrote her parents every day and she survived.

Two years after she became a wife, she became a mother. First, Bill, who “never met a stranger.” Then, Hal, a boy who became his beloved older brother’s shadow.

The voice on the phone stops. Is the taking up too much time? She almost laughs at that and makes a joke about being short of time. The voice is stronger, as if memories give her strength.

They were a family. Her boys had their own front porch to grow on. There were picnics and conferences at school with their teachers. Bill was the class cut-up. Hal was too shy but was the best of boys.

Hard times came. Her husband’s first small business failed. But the family was together and they survived. Where did the time go? She wonders that now, but cannot remember if she noticed the days slipping away then.

Bill was dead. Thirty years have passed but she remembers that day as if it were filed with the other obituaries in the front room. She cried. Her husband cried. Hal shut himself in the boys’ bedroom. When he came out, he was changed in a way that made her heart ache. He never spoke of his brother again.

She got through the days when Hal was overseas by praying he would come home again.

When he did, their life went on. He stayed at home after his return and helped his father with the family business.

Hal was at his father’s side when he died in 1967. She had left the hospital room for a minute and the way she felt seeing her only child bent over her husband is a memory, too.

Her son died four years ago. He was never anything but her best boy. When she thinks of her husband, she sees his face. With Hal, it is his smile. Bill has become the picture on the mantle, the eyes under the Army visor.

She has lived her life since then alone in the house with the front porch where no one plays now.

She became more and more alone as the years went by. Fewer faces at church were familiar. She was an old woman and who would take the time to get to know her?

Her heath, always good, began failing last year. She sold the family home in January and moved into a nursing home.

Last month, she was hospitalized for a list of ailments she is sure will mean her death.

She has thought about it — about dying — many times. She believes she will see her family again and will not be sorry when her life as it is now is over.

But — and her voice became firmer still — she did want someone to know she was alive and soon would not be.

She just wanted someone to know.

FORT WORTH STAR-TELEGRAM

(UPS 206-260)

Along the railroad tracks

Where the tracks used to run. When they took the tracks out they left this road, which is now the Santa Fe Trail.

Some Sunday mornings David and I would drive in my blue Toyota long-bed P/U truck to the Santa Fe train yard near downtown. We’d sit in the truck and watch the yard-men couple and uncouple the cars, the mighty engines moving back and forth, tracks being switched, and all the other things that happen in a train yard. A few times security would tell us to leave, but mostly we just sat there having a good time, listening and singing along to a Hank Williams tape. We especially liked Honky-Tonk man, which David changed slightly – “Hey, hey, mommy, can your daddy come home” and then we’d always shout, “Yes!” And of course, Lonesome Whistle. We’d butcher those lyrics, too. David was two or three years old at the time.

When he was even younger, we’d be at home and hear that train whistle blow from the tracks near home, and Leslie or I would grab David, jump in the truck or car and drive to the tracks so he could wave at the engineer.

Other days we would walk along the tracks. When David was little, I’d carry him on my shoulders. Some of the engineers would wave at David and at least once, one of them threw us a little bottle of water. “Hey, little boy!” the man said as he threw it. “Hey little bow!” was how David reported it to Leslie.

Away we go!

When he was older, like 4 or 5, he liked to force his way through the underbrush along the sides of the higher track elevation or berms. (The tracks are long since torn out and replaced by the Santa Fe Trail.)

The Lakewood Country Club golf course lay along part of the tracks, so we usually found some golf balls along the way. We also brought home several hundred old rusty railroad spikes – some of which I have to this day. On the side of the track opposite the country club was a drainage ditch that usually had water running. When David was 6 or 7 we would build dams across the water and since it was running, there would just be more and more water, so the dams got bigger and bigger, but the water always prevailed. Sean from down the street and David’s lifelong friend, Chris would work on the dams when they were around. Still the water ended up flowing over or around the dam no matter who was working on it. In summers in the still backwaters along the ditch there were polliwogs!

Sometimeswe would walk as far as East Grand Avenue and get a treat at Doug’s convenience store. The man who ran the store would always give David a little something extra. We’d sit outside and have the treats, then walk back home. Sometimes Leslie would drive to Doug’s and bring us back home. David and I would relate our adventures to Leslie and my Mom. I look at those days akin to “Those Happy Golden Days.”

By the tracks: a boy who has proudly lost his two front teeth!

A mile or so past Doug’s was what we called the “big black bridge” – a black metal bridge about 50 feet over/above White Rock Creek. I’m guessing the bridge was around 200 feet long. Several times we climbed up the utility ladder on one of the concrete supports to the bridge tracks. I would go first and belay David on up, then we got quickly off the bridge. It always made me nervous to cross the bridge as trains ran regularly on the tracks.

There was a dirt road (long since closed) from Grand Avenue to the bridge. A few times we drove to the bridge to fish in the creek. Once two men approached us while we were sitting in the truck under the bridge. I didn’t like their demeanor and I cleared my .357. Even though the men couldn’t see the weapon, they could somehow tell they should give up on whatever they had in mind and they left.

It’s hard to remember exactly how old David was – maybe 3 or 4 – that time when we were deep in a bottom-land forest not far from the bridge. We were sitting on a log and I was telling him about the quest for the Holy Grail and suddenly it was as if he locked in completely on what I was saying in a way I had never seen before. It was a moment of wonder.

Well, I’m a honky-tonk man
And I can’t seem to stop
I love to give the girls a whirl
To the music of an old jukebox
But when my money’s all gone,
I’m on the telephone singing
Hey hey mama can your daddy come home

YES!

The secret road from Grand Avenue to the “Big Black Bridge”

A dream about grassroots grant-writing (of all things)

I’m grateful for this dream. Jean and I are in the habit of lying in bed in the mornings, having coffee, talking, watching our “today show” (the sky, birds, the SF Bay, the Marin hills, and whatever else we can see from bed), and having a short meditation on what we’re grateful for.

One thing about this dream is that the two themes were so vivid and intertwined – one theme being our surroundings as we walked along and the other theme being what I was saying and thinking. My recall of the details of the dream is far greater than most dreams I can remember.

_____________

The dream: Jean and I were walking in a warehouse district on the edge of downtown Dallas. I was telling her about the grants research and writing process I used beginning in the early 1980s. We were holding hands and walking through vacant lots and deserted buildings and…

I was telling her about the foundation directories I found at the Dallas Public Library, going through these big books page by page writing down information on foundations whose areas of interest matched my own (especially healthcare, refugee, and justice issues). I also kept information on foundations with board members I had some connection with, no matter how small. I was thinking in detail about the area of the library where the foundation books were kept.

We were walking on paths winding through dry, sun-blasted vacant lots and sometimes on concrete floors with broken glass in big empty buildings like old steel mills. There were a few people around – they seemed like about who you’d expect in that sort of environment, many broken, some might be dangerous, and I was greeting people the usual way: “Hey now” and I was talking about …

the proposal-writing area in my office – a ~3×8 plastic table divided up into labeled squares for the documents that had to accompany proposals, like 501 (c)(3) docs, annotated board member lists, budget documents, etc., etc. and telling Jean about sending proposals every few weeks, each one rewritten and better than the previous one. At the same time I was teaching and volunteering and delivering services – building a reputation and I had a reputation.

The environment we were walking in was deteriorating, becoming a little more ominous, a real desolation row. I was glad I’ve been in these sorts of places before. A mentally ill kid, a teenager walked alongside of us for awhile. We walked past a woman with eight Doberman pinschers. I was relieved to see some condos ahead, but when we got to them we realized they were public housing projects and run-down like everything else. A young woman met us as we were walking up to the buildings. She was a little weather-beaten, tanned. She was wearing a green skirt with a fringe on it; she was looking something like some of the people at the Rainbow Gathering, pretty run-down herself. She offered to take us in to one of the apartments to “see Don” – I said “No, but thank you” and she was like a classic case of a shrug and whatever.

I was telling Jean about writing proposals for Vietnam veterans services, refugee health, and drug treatment and prevention. I knew I wouldn’t get funding from my first proposals, but I didn’t care; I was learning how to do it. I started with the most obscure and least likely foundations and worked my way up the ladder to bigger and better-endowed ones.

Everything was pretty desolate and we couldn’t see downtown anymore. I jumped across a ditch and Jean took three steps to her left and got across on a level place. We were both getting tired (but there was no place to stop). I asked Jean if she needed to pee and she said no and then I awoke and got up to pee. That was the end of the dream. I wrote all this down at 0530.

___________________

In most years when I was writing I averaged bringing in around $100,000. I also initiated other means of development as it’s essential for nonprofits to have multiple streams of income. I never saw any of the money personally, but I accomplished most of what I set out to do: a lot of people got help – from broke-down veterans to “jaded, faded junkies” to children impacted by drugs to refugees and immigrants from across the world to children who were abused to people at the end of life. I had a dream of the world as a better place, less suffering, more justice, all that.

Money for changing the world http://ckjournal.com/money-for-changing-the-world

A ceremony at the Medical Examiner’s facility

Khmer Rouge/death coming to a village

Paintings are by children at Khao-I-Dang refugee camp on the Thai-Cambodian border.

Sometime in 1981 I got a call from a friend, Kevin who taught courses in infectious diseases at Southwestern Medical School. He asked if I wanted “to put in some PPDs” (tests for tuberculosis). “Sure,” I said. Leslie wanted to go and we met my friend at a two-story house on Sycamore Street near the corner of Carroll and Live Oak Streets. The house was called the “Welcome House” and there were several newly arrived families from Cambodia. Refugees. They were all thin and traumatized from war, torture, concentration camps, refugee camps (which, by the way, are not nice places), and travel to this foreign land called Dallas.

Kevin and I put in the PPDs via needle just under the skin. I was struck by how quiet everyone was, including the children, even when I slipped the needle in. Meanwhile Leslie was having a good time holding a baby. I remember Leslie was wearing a pink tank-top and afterward she was captivated by the baby scent that clung to the fabric.

Khmer Rouge killing

A day or two later the refugee agency caseworker called me sometime in the early morning. “Kao Ly, he already died” (name changed). I didn’t know what else to do so I drove to Sycamore Street. “Kao Ly” was a middle-aged man with four or five sons and a daughter. He was, in fact, lying dead in a bed he shared with several of his sons.

An ambulance took his body to the medical examiner’s (ME) office where he was held for several days for autopsy. During that time, another Cambodian family took care of the children and the caseworker arranged for them to go to another state to live with their mother. The ME was holding the father’s body I guess because they were waiting on toxicology. We wanted to have a ceremony before the children left.

Someone knew a Korean monk who was willing to hold the ceremony and that’s how we ended up on the loading dock at the ME’s facility, a several story building adjacent to the county hospital. At the time Dallas County had a population of about 1.5 million people which meant a lot of corpses processed through that building. The building smelled of death. There were Christmas lights on the dispatcher’s glass-fronted cubicle and some Pepsi cases stacked along the wall. Someone wheeled the body out, covered in a sheet up to just under the chin.

Running away

There was the body on the gurney, and beside it four desolate children and the monk wearing an orange robe. Over to the side was the refugee caseworker and me. The monk lit incense sticking up from a can with sand in it, he lit a candle, he extended a string from the body to the children with each child holding on to it, he chanted in Pali for awhile, and then he reached into his robe and pulled out a pair of scissors and he cut the string between the body and the children. It was a powerful moment in the midst of all this death and suffering.

The children went to live with their mother. I’m still in contact with several people who passed through the Welcome House when they were children, though I’ve lost touch with the family of the man who died. I know that at least several of the children from that family have done well in life.

Children at Khao-I-Dang refugee camp

Love in the time of cancer

We went to an anniversary party for two of Jean’s long-time friends. It was a celebration of love – the need for love, the beauty of love, the healing power of love, the joys of love, the enduringness of love…

Dinner was with about 30 people at a long table poolside in a garden on a hill sloping down to a vineyard and the weather was perfect. I didn’t take any photographs, alas, but this photo taken a few years ago captures the vibe.

In Big Sur

Among the six people I knew sitting with us were three cancer survivors, three widows or widowers, one person whose spouse has succumbed to dementia, at least one facing significant chronic illness, and all of us in love. Buoyed by love, all of us face to face with ultimate questions and all engaged with the final life stage of integrity vs. despair. All have lost so many, many friends and loves. I imagine just about everyone at the party is in more or less the same circumstances.

Years ago, when I was working mostly with older people I came to realize that I had much to learn from them about love. Love in the time of cancer. Love in the time of dementia. Love in the time of stroke. Love in the time of dying and death. And love in the time of romance. This is it. This is what we are given. This is as good as it gets. This life. This love. This hope. I’m glad to be one of those older people now.

Our friend Peter told me that every morning he and his partner set a timer for 5 minutes and spend those 5 minutes reflecting silently on gratitude. Now we do that.

“And now these three remain (endure): faith, hope and love. But the greatest of these is love.”

Chronic pain

I’ve Looked at Pain from Both Sides Now…

Before implementing any part of these pain management strategies you must first consult with a healthcare professional.

The purpose of this post is to give people practical tools for managing chronic pain. 

I’ve looked at pain from both sides now, from other people’s pain in hospice care and primary care to my own chronic pain experiences. Here I want to discuss how to manage chronic pain and provide background on why pain is so problematic for so many people. Discussion includes effective medical management, random tips, terms and definitions, difficulties (real and imagined) in pain management, and my background for writing. Topics are ordered from my sense of which are likely most relevant to people in my position – a pain patient. While some information and principles here apply to end-of-life care, this is written for adults with chronic pain not related to the end of life.

Reading this requires effort. Pain is a complex problem encompassing all realms of being – physical, psychological, social, environmental, and even spiritual. I tried, but often failed to keep it uncomplicated.

Remember, for chronic pain there is seldom a single answer or “magic bullet.” Pain is complex, the answers are complex, and and complete relief is very difficult to achieve.

Managing chronic pain (pain that lasts more than three months) Overall references:

  1. https://www.cdc.gov/opioids/healthcare-professionals/prescribing/guideline/recommendations-principles.html#follow-up,
  2. https://www.cdc.gov/mmwr/volumes/71/rr/rr7103a1.htm

The CDC notes that, “chronic pain can lead to impaired physical functioning, poor mental health, reduced quality of life, and contributes to substantial disability and death each year” (Reference 1 above). In the following discussion, I will cite some risks in taking pain medications. These should be understood in relation to the preceding risks of pain. In other words, there are significant risks in pain per se and in the effective treatment of pain. Some institutions and individuals have misinterpreted earlier CDC guidelines, in particular the 2016 Opioid Prescribing Guidelines so that medications are under prescribed and human suffering is increased. The 2022 guidelines seek to clarify and correct “misapplications” of the 2016 guidelines (1, 2).

In all cases, an accurate diagnosis of the cause(s) of pain is essential. Even when the cause of pain has been diagnosed, rapid worsening or onset of pain should always be evaluated by a competent medical professional.

Medications for pain

If pain can be managed with acetaminophen (Tylenol) or NSAIDS (non-steroidal anti-inflammatory drugs such as ibuprofen or naproxen), great, you’re fortunate and there is no need to read further. NSAIDS are generally more effective than acetaminophen but must be taken with food as they are irritating to the GI system. No problem – just have a few bites of non-spicy food before taking an NSAID. Note that NSAIDS should not be taken with “blood thinners.”

For moderate to severe acute or chronic pain not controlled with NSAIDS or acetaminophen, opioid medications such as oxycodone, hydrocodone, or morphine are commonly used either in immediate release (IR) formulations such as Percocet or Norco; or extended release (ER) such as OxyContin or MS Contin. Regardless of the opioid formulation, IR or ER, other medications such as acetaminophen or NSAIDS are often taken along with the opioid.

Common side effects (SEs) of opioids include respiratory depression sometimes leading to death, tolerance, dependence, nausea and vomiting, constipation, sleepiness, dizziness, depression, decreased testosterone, itching. Respiratory depression is the most significant SE and is increased in “opioid-naïve” patients with high dose opioids or concomitant use of opioids + alcohol, tranquilizers, or gabapentin. Note that even regular users may experience serious side effects from (especially) high dose opioids or mixing medications as described above. Some SEs decrease with time or adjustment of dose. Nausea is a very common early side effect and should be treated with meds such as ondansetron – usually for about 3 days. Constipation is inevitable and is treated as described below under random tips. Also see below for discussion of tolerance and dependence. Tolerance is basically inevitable. Knowledgeable clinicians will address tolerance with increased dosing or closer intervals of administration – up to a point. That point is usually if dependence develops, and even then, opioid therapy may be warranted.

(Many people are under the impression they are allergic to codeine or other opioids because they were nauseated when they first took it. Nausea is a common side effect, seldom an allergic reaction.)

In the case of neuropathic (nerve) pain, the first drugs of choice are non-opioid medications such as anti-seizure meds (e.g., gabapentin, carbamazepine) or certain antidepressants (e.g., duloxetine, Elavil). These may be combined with opioid medications and/or NSAIDS such as ibuprofen or naproxen. Combining gabapentin with opioids increases the risk of overdose, but concomitant opioid therapy may be indicated. Concomitant NSAIDS or acetaminophen are often helpful. Success in reducing pain with (for example) gabapentin alone in doses of 1200-3600 mg/24 hours ranges from 30-40%, with >50% of patients experiencing adverse effects. Common side effects include somnolence, dizziness and difficulty walking. References:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6452908/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6464253/,

https://www.nytimes.com/2019/05/20/well/live/millions-take-gabapentin-for-pain-but-theres-scant-evidence-it-works.html

How to manage pain

Take enough of the right medicine at dosing intervals according to the medication(s) duration of action or effect. For example, oxycodone in immediate release form such as Percocet has an effective duration of action of at best 4-6 hours, while oxycodone in the sustained release form such as Oxycontin has an effective duration of action of around 8-12 hours.

When pain is an ongoing problem the ideal situation is to take an effective dose at intervals that maintain a relatively stable state of pain relief without significant impairment. It is generally better to take medications on a schedule to prevent pain rather than waiting until the pain increases. If you spend enough time with your pain, you may discover it’s worse in the morning or late afternoon, so dosing may need to be adjusted accordingly. One person may get by with just a morning dose, while another may take an opioid only in the afternoon and evening.

Use combinations of medications such as oxycodone and ibuprofen. Oxycodone and hydrocodone are often given in pills such as Percocet or Norco containing the opioid and low-dose acetaminophen (Tylenol). Norco 10/325, for example contains 10 mg of hydrocodone and 325 mg of acetaminophen, which is equal to one tablet of regular strength acetaminophen, so this acetaminophen component is clinically negligible for pain relief. To get any pain relief from the acetaminophen component It is thus necessary to take extra acetaminophen with the total acetaminophen dose not exceeding 1000 mg 4 x day. Most first time users will definitely feel the opioid effects of hydrocodone 10 mg. In fact, the CDC recommends sometimes starting with a low dose of 2.5 mg, i.e., half a 5 mg tablet.

Note that opioids and NSAIDS act in different ways on pain. Opioids act on the central nervous system, while NSAIDS inhibit an enzyme that plays a part in pain and inflammation. The daily limit for ibuprofen is 1200 mg. Acetaminophen blocks pain receptors and the daily limit is 4000 mg. https://www.ncbi.nlm.nih.gov/books/NBK547742/#:~:text=The%20main%20mechanism%20of%20action,the%20lack%20of%20these%20eicosanoids.

Opioid dosing should be based on severity of pain, patient conditions, patient responses to treatment, and CDC or other reputable source guidelines. Dosing should be understood in terms of morphine milligram equivalents (MME). The link below discusses means of conversion. Examples of the MME of common medications/dosing:

Hydrocodone 5 mg 4 times day/24 hours MME = 20 mg morphine/24 hours by mouth or about 7 mg morphine intravenously (IV) or intramuscularly (IM)/24 hours.

Oxycodone 5 mg 4 times day/24 hours MME = 30 mg morphine/24 hours by mouth or about 10 mg morphine IV or IM/24 hours. https://www.cdc.gov/drugoverdose/training/dosing/accessible/index.html

Note that dosing of morphine or other opioids taken by mouth is different than when taken IV or IM, e.g., 10 mg morphine IV is about the same as 30 mg morphine or 20 mg oxycodone by mouth (except IV has a much quicker onset of action). https://www.capc.org/documents/download/324/

The CDC notes that there are increased risks of opioid-related harms in doses of any opioid greater than 50 MME/24 hours, especially in opioid-naïve patients and/or with concomitant use of tranquilizers or alcohol. The CDC states that clinicians should avoid “increasing dosage to more than 90 MME/day or carefully justify a decision to titrate dosage to more than 90 MME/day.” Note that when pain is severe, this caution does not preclude taking more than 90 mg MME; rather it requires “carefully justifying a decision” to go past 90 MME. https://www.cdc.gov/drugoverdose/training/dosing/accessible/index.html

In summary, for moderate to severe chronic pain not managed by non-opioid measures take enough opioid medicine at frequent enough intervals to keep the pain at bay. Combinations of opioid and NSAIDS are usually required. Other meds may also be required for neuropathic pain. In most cases, alternative methods should also (concurrently) be employed.

Random tips

The risk of falling is increased with opioid medications.

Mixing opioids with alcohol, tranquilizers, or less commonly, gabapentin increases the risks of impairment and dangerous side effects such as falling or respiratory depression.

Understand what addiction is and is not. See terms and definitions below.

The ideal is pain-free and alert – which is very difficult to achieve if you’re living a relatively normal life. But you should not be suffering and the pain should at a minimum be bearable.

Numeric pain ratings are subjective (“On a scale of 1-10 with 10 being the worst, how would you rate your pain.”), but they are what we have.

Qualify your rating, e.g., “Most of the time when I’m walking, working, or just living my life, it’s a 7. If I’m completely immobile it’s a 5.” Don’t say your pain rating is an 11 – unless you’ve been burned, have advanced cancer, are trying to pass a large kidney stone, and so on. Don’t exaggerate. Tell providers you’re not going to embellish or exaggerate anything.

Constipation is basically inevitable with opioid use. With frequent opioid use staying well-hydrated and fiber intake helps, but a stool softener and stimulant laxative are usually also needed.

Alternative methods include the below. These are not substitutes for effective medications, rather each one can be part of a comprehensive pain management regime. “All these things help some people some.” (https://www.nature.com/immersive/d41586-023-00869-6/index.html)

  • Meditation – Jon Kabat-Zinn is one well-regarded source of information on pain meditation.
  • Cognitive behavioral therapy (CBT) – a psychological, goal-directed approach in which patients learn how to modify physical, behavioral, and emotional triggers of pain and stress, i.e., strategies for how to deal with it.
  • Certain medications for depression or for seizures, some of which can also treat pain. Note that pain often leads to depression and anxiety, hence treating these problems may help independently of the pain relieving qualities of, for example, duloxetine.
  • Pain patches such as Tiger Balm.
  • Interventional therapies, like steroid injection or nerve blocks.
  • Exercise and weight loss. Water walking is a good option as body weight is less of a factor. PT is sometimes used.
  • Hot or cold water bottle.
  • Other therapies such as acupuncture and massage. Chiropractic interventions are helpful for some, but others report increased pain or injury from “adjustments.”
  • Distraction or being engaged with things other than the pain.
  • Maintaining social connections.
  • Lifestyle adaptation responses such as simplifying meal prep, decreasing activity at times when the pain is usually worse, limiting activities that may worsen the pain, planning distracting activities around times when the pain is worse, giving medications time to work (plan inactive time between dosing and going forward with the day), doing activities likely to increase the pain at times when pain tends to be less.
  • Accepting the presence of pain and concomitant life changes in a positive manner.

Personally I utilize more than half of the above measures, while trying to not have the pain or pain relief measures dominate my life.

What about marijuana, including CBD and THC? Some people find these helpful in reducing pain per se or in changing the subject from the pain to being stoned. I am skeptical of some of the claims of the more messianic advocates.

Terms and definitions (https://www.cdc.gov/opioids/basics/terms.html)

Chronic pain: Pain that lasts more than 3 months.

Neuropathic pain: “Nerve pain” or pain from insult to the nervous system. Neuropathic pain is burning, tingling, stabbing, or shock-like. Pain classified as neuropathic includes evoked pain, which is pain from stimuli that ordinarily would not cause pain, such as touching or brushing against skin. Diabetic neuropathy, post-herpatic neuralgia, alcoholism, and HIV are some common causes of neuropathic pain. The other major class of pain is somatic pain or pain from the body other than nerves (see following).

Somatic pain is “characterized as well localized, intermittent, or constant and described as aching, gnawing, throbbing, or cramping” and arises from the skin or musculoskeletal system. (https://www.ncbi.nlm.nih.gov/books/NBK12991/)

Visceral pain is “poorly defined and diffuse and commonly described as deep, gnawing, twisting, aching, colicky, or dull.1 It is usually associated with autonomic features (e.g., sweating, nausea and vomiting) and highly emotional (e.g., anxious, feeling of impending doom)” (From the American Academy of Physical Medicine and Rehabilitation: https://now.aapmr.org/differential-diagnosis-and-treatment-of-visceral-pain-in-the-pelvis-and-abdomen/

Opioid: Substances that “interact with opioid receptors on nerve cells in the body and brain, and reduce the intensity of pain signals and feelings of pain” (CDC, 2). Examples include morphine, Dilaudid, oxycodone, hydrocodone, codeine, and of course, the mother of all opioids, opium. Fentanyl is a synthetic opioid and Tramadol is similar to opioids.

Tolerance: Decreased therapeutic response to opioids. Tolerance is an expected phenomenon that builds over time. To counteract tolerance opioid dosing is increased most commonly in amount, but also in frequency of dosing.

Dependence: when the body adjusts its normal functioning around regular opioid use. Unpleasant physical symptoms occur when medication is stopped suddenly.

Addiction: Addiction occurs when attempts to cut down or control use are unsuccessful or when use results in social problems and a failure to fulfill obligations at work, school, and home. Opioid addiction often comes after the person has developed opioid tolerance and dependence, making it physically challenging to stop opioid use and increasing the risk of withdrawal.

Nausea and vomiting: As noted earlier, nausea and vomiting from opioid use is common and occurs most often in the early days of therapy and is readily treated with anti-nausea drugs, especially ondansetron (Rx only).

Constipation: “Chronic constipation is infrequent bowel movements (fewer than 3/week) or difficult passage of stools that persists for several weeks or longer.” https://www.mayoclinic.org/diseases-conditions/constipation/symptoms-causes/syc-20354253. Treatment should be focused on prevention and includes a high fiber diet and plenty of water. Fiber and water are usually not enough and a combination of stool softener and stimulant laxative may be needed.

Why is it so difficult to treat pain effectively?

Chronic pain is a complex physical problem that is incompletely understood and the patient experience is subjective, i.e., there are no labs or images that necessarily confirm that pain is present or absent. Also, the mainstay of effective treatment for moderate to severe pain is opioid medications and opioids have several drawbacks, including significant side effects, cultural influences, and legal issues. Moreover most physicians are not well-trained in pain management and the aforementioned CDC 2016 guidelines have been widely misinterpreted (see CDC 2022 guidelines for further discussion of this).

A personal note: I was talking last year with a physician who has been involved in almost 200 medically assisted deaths. He told me that none of those patients were in hospice care and seeking release because of pain. In other words, hospice is able to manage pain effectively – and so can you, at least tolerably.

Background related to writing this

I was the founding Director of the VNA Home Hospice, the first hospice to provide care in Texas. I have studied pain and have written a book (published by Lippincott) on end-of-life care and have written related articles and chapters in journals and texts. I have cared for a number of patients with pain. I have had chronic pain for several years.

End Notes

Existential philosophers and therapists emphasize the importance of confronting the basic conditions of existence, which include suffering. By deeply reflecting on pain, one can grapple with profound existential questions and perhaps arrive at a deeper understanding of life’s meaning.

Consistent communication with healthcare providers is vital when adapting one’s life to manage chronic pain. Some, but not all can provide guidance tailored to individual needs and conditions. It’s also important to remember that what works for one person might not work for another; finding the right combination of treatments and adaptations often requires time and experimentation.

From Blossoms

From Blossoms, A poem by Li-Young Lee

From blossoms comes
this brown paper bag of peaches
we bought from the boy
at the bend in the road where we turned toward
signs painted Peaches.

From laden boughs, from hands,
from sweet fellowship in the bins,
comes nectar at the roadside, succulent
peaches we devour, dusty skin and all,
comes the familiar dust of summer, dust we eat. 

O, to take what we love inside,
to carry within us an orchard, to eat
not only the skin, but the shade,
not only the sugar, but the days, to hold
the fruit in our hands, adore it, then bite into
the round jubilance of peach.

There are days we live
as if death were nowhere
in the background; from joy
to joy to joy, from wing to wing,
from blossom to blossom to
impossible blossom, to sweet impossible blossom.

——————–

This poem was on my office wall for many years at Baylor. Now, years later I’m thinking: I live with the awareness that death is
in the background; from joy
to joy to joy, from wing to wing,
from blossom to blossom to
impossible blossom, to sweet impossible blossom.

—————-

More from Li-Young Lee

 

 

Phnom Penh to Saigon, 2005

Phnom Penh to Saigon (Vietnam, 2005)

Into the mystery (in Hue)

Yesterday caught bus from guesthouse from Phnom Penh to Saigon ($5 USD). The GH owner said and then repeated that we should go straight across border, not stop at a restaurant on Cambodian side. The bus/ride was okay, not especially comfortable, but not terribly uncomfortable – especially after I got up and had the guy who was riding along with the driver (keeping him company?) turn off the loud radio. Bus clearly built for less bulky people. When we stopped at the border, the driver said, “You have to wait here for 30 minutes” (at the restaurant, of course). Along with a few other people we just pulled our things off the bus and headed across the border. Got across border okay, though it is never easy. Once across, we had to wait for all the people who thought the bus driver knew more than the GH owner. Oh well – a demonstration of herd psychology, I suppose. Photo left: Here she comes! Photo below: Restaurant on Cambodia-VN border – dog asleep
on the floor

When they all finally got across the border we got on another bus – very nice. There was (of course) a man t

Here she comes!

o keep the driver company and also a young woman who sang a couple of songs, one of which was pretty, and gave us some incomprehensible, but much appreciated travel tips and lesson in Vietnamese. Bus brought us to the Happy Tour company office in Pham Ngu Lao area of Saigon. Pham Ngu Lao is kind of like Khao San Road backpacker area in Bangkok, except no dreads and less drinking, etc. Very nice area. We left our packs at the tour place and walked up the street to find a room. When in Saigon, I always stay at the Ly Ly Guesthouse. Actually, this is the first time I’ve been in Saigon, but if I come back (and we are considering this) I will again stay at the Ly Ly: $12 for 3 bed triple with AC – immaculate, quiet, good AC. Only problem was that our room was on the so-called 4th floor, which really is the 5th floor and in the case of the Ly Ly, 5th and 1/2, as the place starts 1/2 level up. Whew! I’m getting some exercise.

David and I went out for some pho on this rainy evening and clicked into the magic of Asia in monsoon. Yes, it is good to be back.

A lot of travelogues and guidebooks are negative about Saigon, but we like it fine. From what I have read there are a lot of beggars here. There are a few, but nothing even remotely approaching Phnom Penh – or actually the othe