There is no blame

This article came up yesterday on Facebook:

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

How never to say the wrong thing….

Well, now, wait. What the hell is your goal? To always comfort people? To always say the right thing? Peaceful and sweet and niceness all the time?

Why?

And isn’t it dishonest?

Isn’t a true friend that loves you the friend who says, hey, this guy you are dating sounds just like the last one, didn’t you say you weren’t going to do that again?

Even if it makes you mad. And you forgive them because damn it, they are RIGHT. You might not forgive them right away. It might take a while. You might shun them and then have to do some crawling and apologizing.

Our society is terribly afraid of emotion. Don’t say the wrong thing. Do not make someone angry, afraid, never ever hurt anyone.

Except…. I am a physician. And I’ve had my mother and then my little sister die of cancer.

With my mother, we did what she wanted. She was home for 6 weeks in hospice. My sister and I cried for two minutes after I told her the surgeon said feeding her iv would kill her faster. We took her home on iv fluid and morphine to starve. She was tough tough tough. We had over thirty visitors from as far away as London.

My partner was her doctor. She did a home visit and she cried. Afterwards my mother said, “I didn’t appreciate that.” So we did not cry.

My sister did one day when I was at work. She started crying after my mother was asleep in the hospital bed. She called me. “I started crying. And everyone left. Everyone left the room. Not one person stayed with me.”

Ouch. Now I can see that once my sister started, everyone was afraid that they would start too. So they all left.

I stopped talking. In the fifth week, family called and I was handed the phone. “How is she? Are you ok?” I just held the phone. I knew I was supposed to say reassuring things, I am ok, she is ok, but I wasn’t and she wasn’t. She was dying and I was broken, weeping inside. So I just held the phone, silent.

My mother died. We were all exhausted. And for the next two years I thought about it…. and one thing that I thought was, I wish she had let me cry. I did what she wanted. We all did. But in the end, I never got to cry with my mother and say how much I was going to miss her.

And maybe she would not have appreciated it. But I am her daughter! Don’t my feelings and wishes matter? There are two of us in this relationship!

Then my sister got breast cancer. At age 41. Stage IIIC. And this time I thought, I will be different.

I refused to do what she wanted. I told her I loved her, I told her when I was mad at her, I told her when she was hurting my feelings and when she was being wonderful. I held BOTH of us close. I held her close but I refused to let her go into the cancer bubble where no one was telling her the truth.

I was dating a man who complained. He told a couple’s counselor: “I want her to do what her sister wants or cut her off.” I explained about my mom. I explained about the cancer bubble, where people stop being honest and only do what they think you want. The counselor defended me.

And I think I did the right thing. For me. AND for my sister. Because our last day together, she thanked me and she even apologized for something… and I got to say “I love you anyhow.” I meant it to my bone marrow. People yelled at me for being grumpy, bitchy, not doing what she said…. but I was my real self with her. And she knew it. And she also knew I love her and stayed real with her.

In the hospital when someone is very sick, families fight. They argue. They get angry. The emotions are running high. The doctors, the nurses, the janitors, the desk people, we are used to it. People yell, they cry, they behave badly. But their hearts are breaking, why would we expect them or order them to behave well? Honestly, sometimes they work off some of the anger part of grief by fighting with each other.

In clinic sometimes I am handling a room: a person with cancer with a spouse and one or more children. Adult children. People handle death in different ways. Siblings fight before and after a death, “You aren’t doing right.” We are all different. The way I grieve is different from the way you grieve. There is no wrong, there is no blame.

My sister wanted to handle her cancer with grace. Grace, it’s complicated. For me, the greatest grace is honesty.

I want to die singing, crying, going to see the people I love that are gone, and honestly. The I Ching sometimes says there is no blame. Think if we could all accept each other’s honest emotions. The most beautiful harmony is sometimes the resolution of dissonance. Goodbye, goodbye, I will miss you so….and there is no blame.

 

For the Daily Prompt: harmonize. I took the photograph of my sister four days before she died.

 

play

I took this in 2005. My daughter is going after our friend Sam. She is wearing glow in the dark vampire teeth. He is going along with it and playing along. Three of us are playing because they are my glow in the dark vampire teeth. I have a strong connection with that playful inner child part and so I always have some toy in my dopp kit. Glow in the dark vampire teeth. Temporary tattoos. Glue and glitter for temporary tattoo stencils. A friend once looked in my dopp kit and was very surprised. His only contains toothpaste and toothbrush and razor and practical things.

Blessing on Sam and all the adults who play when the time is right….

dopp kit: http://shop.wingtip.com/why-is-it-called-a-dopp-kit

 

portal cup

If this cup is a portal,Β  where does it take you?

I took the photograph at the Renwick. I asked the guard if I could take photographs. He smiled and said, “We encourage it.” And it’s part of the Smithsonian….free. I could not take my tea inside, and that seems entirely fair….but, free, that is, paid for by the citizens of the United States with our taxes and welcoming people from all over the world to step in and see what is there…..

…..and where does this cup take each of us?

…..and does this fit the Daily Prompt?

ugly

The letter U in virtues and views.

U for ugly.

Is ugly a feeling? Have you felt ugly? Is that a virtue or a vice? Why? If vanity is a vice, then is feeling ugly a virtue? Is beauty virtuous and ugliness the opposite, an indication of evil?

From Dictionary.com: ugly

adjective, uglier, ugliest.
1. very unattractive or unpleasant to look at; offensive to the sense of beauty; displeasing in appearance.
2. disagreeable; unpleasant; objectionable:
ugly tricks; ugly discords.
3. morally revolting:
ugly crime.
4. threatening trouble or danger:
ugly symptoms.
5. mean; hostile; quarrelsome:
an ugly mood; an ugly frame of mind.
6. (especially of natural phenomena) unpleasant or dangerous:
ugly weather; an ugly sea.

I wrote the following poem before 2009, when I was thinking that there are people that I think are just beautiful, but it has nothing to do with surface beauty. It has to do with love and trust. The makeup books in the poem are Face Forward and Making Faces, by Kevin Aucion.

Beauty

Beauty is not on the surface in people

People that I love are beautiful to me
They shine
It doesn’t matter how they look
In fact, scars make them more real
More human
Intimacy is knowing what this scar is from
And that
Knowing their stories
That they trust me to tell me
People that I love are beautiful

I have been wearing makeup
I never cared before really
Until a book by an artist
Showed me his vision
The beauty that he sees in everyone
I call it my paint by numbers makeup book
Because he is a true artist
Who believes that art is for everyone
And so he includes instructions for each picture
So that I too can dabble in his art

I will wear makeup at my family summer lake
I do not think my family will approve
Nor do I think they will understand
They may comment
I will say that I am trying to catch a new man
This will confirm their disapproval
I will break the rules by wearing makeup
Which is exactly the point
But I am also celebrating beauty
The beauty that the Beloved sees
In everyone

 

I took the photograph in 2014 from a train….sometimes we talk about ugly weather, but watching the land and weather change from the train was glorious. I hope you feel beauty in your life.

walls fall down

small beloved that I love
with my small body and soul
come in the yard and play with me
walls fall down

big Beloved that I love
that is all inside and out
come outside and play with me
walls fall down

small beloved that I love
you don’t love me back
I will love you anyhow
walls fall down

big Beloved that I love
loves me back no matter what
my heart opens like a door
walls fall down

small beloved that I love
blessings on your life
I will long to see your face
walls fall down

big Beloved that I love
let all walk in peace
loving kindness, safe and free
walls fall down

 

I took the photograph in Portland, Oregon. Walls… but this wall is around a school that is being rebuilt and the fence is to keep people out of the construction site, safe, and to protect the machinery and supplies for the repair. How do we balance safety and freedom, growth and kindness?

Sending love

Sometimes I wake in the morning, muscles tight and anxious.

This morning I dreamed that I was a teen, going on a trip. I packed my sleeping bag and the new pad. I finally bought a new inflatable pad for camping, last year. I still have my old one, patched and 30 years old and thin. I decided that I am old and stiff enough to have a newer one. I used it for the first time in the tree house. Yoga mat, pad and sleeping bad and I was warm. In the dream that was all I had time to pack: no clothes or books. There was barely room for that. I was worried about the trip and afraid.

When I wake anxious and feeling attacked, I send love. I send love to the people that I am finding most difficult in my life. A family member who with their spouse, have been mean since I was a teen. Not a family member any more: a blood relative, now. I will choose who is family and who is just a blood relative. In the manner of children of alcoholics, this is a terribly slow process. Raised in addiction and enabling, children love their parents anyhow, and it is a slow adult process to learn that love is not addiction, enabling nor enmeshment.

So I send love: may this person be peaceful. May this person be free. May this person be filled with loving kindness. May this person be safe. I send them loving kindness, especially if they are a blood relative who is still cruel. I don’t want them in my life any more and yet I want to forgive them. Forgive but not reconcile, if they are still in the dire pattern. No reconciliation if they continue the behavior.

Sending love.

Sweet Honey in the Rock: In the morning when I rise: https://www.youtube.com/watch?v=ZAJBZXIzKcY

I took the photograph of my mother in the early 1980s. I borrowed my first real camera and took one roll. I scanned this today and my scanner is not up to the detail, but I like the abstraction. I love this photograph of my mother because it is her thinking and concentrating expression.

Pain as a vital sign

A recent article in the Family Practice News says that a survey of 225 physicians reveals that 33% of them think that the opioid crisis in the US is caused by over prescribing opioids. 24% said aggressive patient drug seeking and 18% said it is due to drug dealers. How quickly things change.

In 1996 pain was declared the fifth vital sign, after temperature,Β  pulse (heart rate), respiration rate and blood pressure. I disagreed with it because it focused on pain, by telling the nurses in the hospital and the outpatient providers to always to ask about pain. I thought it would be better to focus on level of comfort than pain. I thought we were using opioids far too freely and I thought that patients were getting addicted. The pain specialists said that we had to treat pain, and we were given very few tools other than opioids. Primary care providers were told that they could be sued for too much or too little pain medicine.

I also disagreed with it because pain is NOT a vital sign. That is, the level of pain does not correlate with illness. If a person has a high fever of 104 I am sure they are sick, a fast or very slow heart rate, a blood pressure too high or two low, they are breathing too fast: these are vital signs. They often correlate to illness and help us decide if this is outpatient, urgent or emergent. But pain does not. A chronic pain patient may have a pain level of 8/10 and yet not be an emergency or in a life-threatening state at all. That does not mean that they are lying or that we don’t wish to help with pain.

In June, 2016, the American Medical Association recommended dropping pain as a vital sign. https://www.painnewsnetwork.org/stories/2016/6/16/ama-drops-pain-as-vital-sign. The Joint Commission for Hospital Accreditation dropped pain as a vital sign in August, 2016. https://www.jointcommission.org/joint_commission_statement_on_pain_management/

Why? Not only were people getting addicted to opiates, but they were and are dying of unintentional overdoses: sedation from opiates with alcohol, with anxiety medicines such as benzodiazepines, with soma, with sleep medicines such as ambien and zolpidem. If the person is sedated enough, they stop breathing and die. The CDC declared an epidemic of unintentional overdoses in 2012: https://www.cdc.gov/mmwr/preview/mmwrhtml/mm6101a3.htm and said that more US citizens were dying of prescription medicines taken as instructed then from motor vehicle accidents and guns and illegal drugs.

So the poem below and a second poem I will post tomorrow reflect how I thought about pain as a vital sign. It is not a vital sign, because a high pain level does not tell me if the person is critically ill and may die. It does not correlate. Pain matters and we want to treat it, but the first responsibility is “do not harm”. Letting people get addicted and killing some is harm.

Also, opioids have limited effectivenessΒ and high risk for chronic pain. I have worked withΒ  The University of Washington Pain and Addiction Clinic since 2010 via telemedicine. They say that average improvement of chronic pain with opioids is about 30%. Higher and higher doses do not help and increase the risk of overdose and death. And the risk of addiction.

I think of pain as information. Studies of fibromyalgia patients with functional MRI of the brain show that they are not lying about their pain. In a study normal and fibromyalgia patients were given the same pain stimulus on the hand. The normal patients said that they felt 3-4/10 pain. The fibromyalgia patients felt 7-8/10 pain with the same stimulus and the pain centers lit up correspondingly more in their brains. So they are not lying.

Why would opioids only lower chronic pain about 30% even with higher doses? The brain considers pain important information. We need to snatch our finger away from a flame, stop if we smash our toe, deal with a broken bone. I think of opioids like noise cancelling headphones. Say you are listening to music. You put on headphones/take round the clock opioids. Your brain automatically turns up the gain: the music volume or the pain sensors. Now it hurts again. You take more. The brain turns up the gain. Now: take the noise cancelling headphones off. The music/pain is too loud and it hurts! With music we can turn it down, but the brain cannot adjust the gain for pain quickly.

We do not understand the shift from acute pain to chronic pain, yet. The shift is in the brain. I think that we are too quick to mask and block pain rather than use the information. Now the recommendations for opioids are to only use them for 3-5 days for acute pain and injury. For years I have said with any opioid prescription: try not to take them around the clock and try to decrease the use as soon as possible. Some people get addicted. Be careful.

If we don’t hand people a pill for pain, what can we do? There are more and more therapies. Jon Kabot Zinn’s 30 years of studying mindfulness meditation is very important. His chronic pain classes reduce pain by an average of 50%: better than opiates. Pain and stress hormones drop by 50% in a study of a one hour massage. Massage, physical therapy, chiropracty and acupuncture: different people respond to different modalities. Above all, reassuring people that the level of pain in chronic pain does not correlate to the level of illness or ongoing damage. And pain is composed of at least three parts: the sharp nocioceptive pain, nerve pain (neuropathic) and emotional pain. We must address the emotional part too. We have no tool at this time to sort the pain into the three categories. My rule is that I always address all three. That does not mean every person needs a counselor or psychiatrist. It means that we must have time to discuss stress and discuss life events and check in about coping.

In the survey of 225 providers, 50% estimated that they prescribe opioids to fewer than 10% of their patients. 38% said less than half. 12% estimated that they prescribe opioids to more than half their patients. The survey included US primary care, emergency department and pain management physicians.

Handing people a pill is quicker. But we can do better and primary care must have the time to really help people with pain.

Vital Signs I

In the hospital now
I am told we have a new
Vital sign
Like blood pressure and pulse
We are to measure
Pain
And always treat it

Sometimes I wonder

Mr. X is in the ICU
I tell his family
He may die

On a scale of one to ten
What is his wife’s pain?
His daughter’s
We are not treating them
Only Mr. X

We try to suppress pain
Signals from our nerves
Physical pain is easier

I think of our great forests
We suppressed fire

And that was wrong
If fire is suppressed
Undergrowth builds up
Fuel levels rise
Fire comes
Rages out of control
All is destroyed

If fires burn
More naturally
More regularly
What is left?

At first it looks desolate
The tall trees are burnt
Around their bases
But they live
Adapted to the fire
Majestic pines
Revealed
Would our values were as clear

Some pines
Seeds
Pinecones
Will only germinate
In fire
When the undergrowth
Is cleared
Conditions are right
For new growth

Perhaps pain is our fire
Grief is our fire

If we block pain
Where does it go?
Does the fuel build?

I wonder if the tall pines
Fear fire
Would they avoid it
If they could

Perhaps suppression
Is not the answer

Perhaps we can change
Remain present
Acknowledge pain
As normal
As joy

Perhaps if I
Step into the fire
I can remain
Present
For you

And you will be
Less alone
Less afraid

I open my doors

Let the fire burn

poem written before 2009

CDC guidelines for treating chronic pain: https://www.cdc.gov/drugoverdose/pdf/guidelines_factsheet-a.pdf

that

Whenever I think

that
is what I don’t want to be

the Beloved laughs
and orders me
to be that

as if I’ve called it
that

the angels surround me
curious

it’s my passion
anger
fear
that calls them

motes from heaven
fall on me
from their wings

and I weep

and step forward
and fall
fall
fall

becoming
that