CK's Journal

I found the first explication of what I was trying to trying to do for most of my life. It is in a memorandum written in 1978 to Elsie Griffith, the executive director of the Dallas Visiting Nurse Association. At the time, I was working on planning and implementing the VNA Terminal Care Program, which was foundational for the first hospice in Texas. In hospice we focused intensively on managing physical symptoms at the end-of-life, such as pain, nausea, shortness of breath, etc.; and on supporting families. The subject here is the spiritual and ethical structuring of this work. It’s hard to believe I sent this and that Elsie accepted it and believed in the vision. Here it is, exactly as I sent it:

——————

June 9, 1978

To: Elsie Griffith

From: Charles Kemp

I feel a strong need to express something that is difficult to express— namely, the spirit which I think should be part of our terminal care program.

I hope we all recognize that the way we die in America is generally poor. To illustrate this let me tell you about a situation I am presently experiencing: Several weeks ago someone called me to say that a friend of theirs was dying of cancer of the breast metastatic to brain, ribs, spine, abdomen, etc. and would I see what I could do to help. The person in question is a 41-year-old woman (Jan) whose 2 teenage daughters live with her husband in another residence. Jan’s mother has been taking care of her for about 7 months and is physically and emotionally exhausted. If relief is not forth coming, Jan will have to go to a nursing home. We have been helping with home health aides and nursing but it’s not enough.

I went to see Jan on a Friday night before I left for a week in California. I found her to be in excruciating pain and to have paraplegia. There were only a few hours left before I had to leave town and although I tried, I could not find any relief. When I returned from California I called and discovered that Jan was on the way to a nursing home.

After visiting her once and seeing what the situation was I committed myself to stay with her 2 nights a week. I can’t say exactly why — I’ve never done this before — sometimes something happens when people meet or when situations present — maybe I ‘m seeing me or my wife — or maybe I have the need to stay grounded (as much as is possible) in the reality of dying as I plan for helping people die as humans.

Staying in a nursing home at night is a strange, sad, and sometimes bizarre experience:

Me: “She needs something for pain”
Nurse: “I don’t work that hall.”
Me: “Where is the other nurse?”
Nurse: “He’s gone.”
Me: “When will he be back?”
Nurse: “15 minutes.”
Me: “She’s really in a lot of pain.”
Nurse: “I don’t work that hall.”
Me: “Are you saying you won’t do anything?”
Nurse: “I don’t work that hall.”

At midnight an aide walks in, turns the light on and off and starts to walk out. I ask her what she’s doing. “Checking the light.” — and out she goes.

Ice pitchers are filled at 5:30 A.M.

And much more. It’s a kind of dumb, passive brutality.

I know you’ve heard and seen a thousand variations on thig sorry tale. You know about the terrible loneliness and dehumanization of dying. You have in your possession some scientifically-oriented things I’ve written about this. So probably I’m trying to touch you with something that is touching me very deeply: The spirit of the terminal care program:

To be touched and to be able to touch people who are lonely and afraid. To be not afraid to feel. To work from the mind and the heart. To experience the personal loneliness and fear that lies within (us all). To care enough not to need to be the hero. To work through the family. This is difficult for me to express. I’ m not looking just for increased services; I’m looking for something that will touch people at every level.

When these things are happening, the people (nurses, aides, social workers, doctors, volunteers, etc.) who are experiencing them need to have to have an incredibly strong support system.

I tell you, I am committed to planning and operationalizing a program which will give what is needed. And I’m firm in my knowledge and belief that this spirit I have so inadequately expressed above is vital to meeting the needs of people who are dying.

Thank you,

—————–

Jan went home a few days later and she died peacefully at home a few months later. She was a brave woman.

The night in the “dumb, passive brutality” of that nursing home was inspirational to me. I’m not saying that over time my colleagues and I ended the ugliness, but at least for people with end-stage cancer, ALS, and other afflictions there are now much kinder, more supportive, and more clinically effective options all across America – and that’s exactly what we were aiming for.

2013 was a great year, 2014 was a hard year, 2015 was impossible

Two friends were here for dinner yesterday evening. At some point we began talking about what we were doing 10 years ago. Not surprisingly, there had been changes and losses for all of us. Here is a partial account of what I didn’t say.

10 years ago on New Years Eve of 2014 I was at a gathering with other members of the Atrium Obscurum crew, the people I worked with to put on forest psytrance events. It was an all-night psychedelic party, with most people tripping and others rolling. At some point we gathered around a firepit behind the house and had one of those ceremonies where everyone writes on a piece of paper something they want to let go of from the past year and then one by one, say a few words, and toss that burden into the fire. When it was my turn I said that 2013 was one of the best years of my life and I had nothing to unburden myself of. I said I hoped 2014 would be as good.

A few months into 2014 Leslie began to decline and 2014 got harder and harder and harder until in March of 2015 she passed away. Then the grief. Late 2014 and into 2015 was one of the two hardest times of my life, the other being my 13 months in Vietnam. Below is brief description of a couple of days in Vietnam.

2024 is unfolding as a good year.

———————

At the “The Hill Fights: The First Battle of Khe Sanh”

I came in with another man on a helicopter to link up with B/1/9 (B Company, 1st Battalion, 9th Marine Regiment) on an operation at the DMZ. When the helicopter came in to where B Co was in those dry hills, the LZ was getting hit with mortars. I didn’t know what was happening and it was a complete surprise when the chopper was about 10 feet off the ground and the crew chief put his boot in my back and pushed me out, followed by a rain of ammo, C-rations, etc. they were tossing off the chopper. There were a lot of mortars coming in, too and I made it to a little hole full of Marines. When I dove in on top of them some lieutenant was telling me to get the hell out and I was just burrowing into the pile, not going anywhere.

The next thing I remember was described in the book, “The Hill Fights” by Edward Murphy. Murphy is writing about someone named Montgomery:

“Corporal Montgomery struggled with the heavy load his team carried as they sought cover. They had almost made it when a brace of mortar shells crashed behind them. The twin blasts threw Montgomery into the brush. When he came to a few minutes later, blood flowed from shrapnel wounds in his right thigh, right hand, left arm, left buttocks, and the right side of his neck.

He says, ‘I looked around. No one else was there.’ Mortar shells were still exploding along the ridgeline… I was afraid I’d been out for a while and had been overlooked in a withdrawal, so I crawled on all fours to a nearby bomb crater. I hurt too bad to go any further, so I started calling for help.’

Two marines hiding in another crater answered. As soon as I told them that I was wounded they crawled over and patched me up. ‘Where is everybody?’ Montgomery asked. ‘Where did they go? Are they all right?’ The two marines told him what they knew which was not much, then Montgomery asked them for a favor. Montgomery pulled a camera from his pack and handed it to one of the men, and with mortar shells crashing behind them the man took Montgomery’s picture. ‘What a souvenir that’ll make,’ he thought. As soon as the mortars stopped Montgomery’s two new friends helped him back to the main body.

(I was the man who took Montgomery’s photo. He was sitting in the dirt in the crater, very bloody, smiling, shooting me the finger.)

Minutes later without a word everyone began to move out. The few remaining able-bodied Marines grabbed the wounded and dead and started humping. The men moved with a single-minded goal: get out of the killing zone. The NVA was not going to let that happen.

About ten men made it safely over the ridgeline before the mortars came again. In rapid succession more than a dozen high explosive shells wracked the column. Marines dove left and right seeking cover on the barren hillside. Still, chunks of hot metal found flesh. Up and down the column men were crying out in pain. Some were wounded for the second time that day. More than half a dozen were also freshly wounded and desperate cries of, ‘Corpsman!’ ‘Corpsman up!’ echoed across the hillside. This attack pushed B/1/9 to its limit. They were burdened with more casualties than they could carry, without food for two days, with little water, low on ammo, and without any prospect of evading the enemy. Some in the unit saw no sense in continuing this way. The ambulatory and uninjured might make it to Khe Sanh if the dead and the badly wounded were left behind. Captain Sayers never considered this. Bravo company would succeed or fail as a unit. That was the way it was. There were no other options. The survivors would sell their lives for a high price, taking as many enemy with them as they could.” END QUOTE

Somewhere on the barren hillside, not far up the trail, we got the wounded man to safety. There was a depression in the trail and there were people tending to a another wounded Marine there. He was dying and they were trying to save him, but when they turned him over some of his insides fell out of his back and he died.

In thinking about this I’ve never been able to remember where the trail finally went. Now I know. Farther up the trail a few helicopters came to take out the last casualties and by the time they got to the dead men, there was extra room on the last chopper. So I got out safely and B/1/9 was linked with K/3/9 (K Co., 3^rd Bn, 9^th Marine Regiment).  

In November 2009 I wrote about what happened with me next:

(11/2009) I was flying out of an operation, in a chopper with a lot of weapons and several bodies. We were flying low, coming up on any enemy too fast for them to hit us except they did, bullets banging into the chopper and it started spinning except the pilot flared it some and though we slammed hard into the ground. It wasn’t a disaster – except for the fact that we had just been shot down by people with bad intent who were undoubtedly headed our way from not very far away. We set up some guns and in just a few minutes we began to take a little fire and then another chopper got there and we dragged the bodies to the other chopper and got out of there (calling in artillery fire on the downed chopper).

——————-

Writing this has been a comfort to me. It doesn’t really bother me much anymore. It’s crazy to think that these things and more happened. The comfort I take is related to the war in Ukraine. I’ve been worrying about the Ukrainian soldiers who are going through heavier combat than I ever did. How can they process it later in life? As I reread the above, I think that if I’m OK, maybe some of them can be, too.

——————-

I read all this to Jean. I am thankful to her for hearing it.

It was a misty, drizzly day, a little cool for the tropics, for once. There were about 10 of us on patrol near some deserted villages. We came upon a small, ruined temple with some walls still standing and a little bit of roof. We stopped there, put a few men on watch, and 6 or 7 of us leaned back against those walls “inside,” smoking cigarettes, talking, dozing, being dry. It was one of the best places I’ve ever been in.

This getting old is getting old. It really feels sometimes almost like combat – it’s dangerous and the casualty rate is certainly high. In combat and in aging, tired much of the time, sleep difficult, too much discomfort. Many of us are taking some strong drugs, too: blood thinners, heart rate regulators, and so on. And the ever-present land mines of falling and accidents. Sooner or later we’re all going to get it. But at least we aren’t all sweaty and smelly now. We don’t have to sleep on the ground, we aren’t eating C-rations, we don’t have to walk around in the rain, our clothes aren’t filthy, nobody is actually trying to kill us, we’re not carrying 40 pounds of guns and ammo along with other gear, the list goes on and on.

Grateful to be.

With all that in mind, here are the rules of the road:

Keep your weapon ready.
Keep your cigarettes dry.
Eat your fruit cocktail first.

Which is to say, keep your shit together (take your medicine, watch your step, drive carefully) and enjoy that fruit cocktail (the best thing in C-rations), because it may be your last.

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…

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

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

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.

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.

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!

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!

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.

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

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…

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!

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!

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)

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.

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.”

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!

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.

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.

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.

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.

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.”

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.