love poem to the monsters under my bed

I am trying to wrap my mind around an aspect of Adverse Childhood Experience Scores. Ace scores.

Raised in war or chaos or an addiction household or a crazy household, kids do their best to survive and thrive. I acknowledge that first. “You survived your terrible and terrifying childhood. You are amazing. You have crisis wiring in your brain. You had to wire that way in order to survive.”

And what does that mean? High alert, high adrenaline, high cortisol, reactive. One veteran says that the military loved him being able to go from zero to 60 instantly.

“Yes, and how is that serving you now?” I ask. “Do you want to change it?”

“No.” he says.

“Why not?” I say.

“Because I know I can protect myself.”

He can protect himself, as I can too. But being on the alert for a crisis, being good in a crisis, being able to fire up like a volcano, is that what I want and is that what he wants? If not, how do we change it?

I think of it as being able to see monsters. Other people’s monsters. My crisis childhood wiring is to pay attention to the non-verbal communication: what people do not what people say. The body language, the tone of voice, what the person is not saying in words, when someone is being polite but the body language is a shut down, a rejection, a dismissal, posturing, aggressive, they don’t like me no matter what the words are, belittling. But if I or my high ACE score patients respond to the body language and emotional feeling, we have named the monster. And the person is being “polite” and will not admit to the monstrous feelings. Those feelings are unconscious or at least the person does not want to admit if they are at all conscious.

In clinic I have learned to dance with the monstrous feelings. I don’t always succeed, but I keep leveling up. It’s a matter of delicacy, inviting the person to admit the monstrous. Some do, some don’t, some don’t the first time or second or third, but the fourth time the monsters are brought out. And they aren’t monstrous feelings after all. They are normal. All I do then is listen and say that the feeling sounds normal for what is happening. It’s like letting off a steam valve.

So how do I and my high ACE score folks learn to do this in social settings as well? When someone is talking to me with a monstrous feeling, meanly, I challenge it. Because I am not afraid of that monstrous feeling. But I have then broken a social contract and the person will like me even less then they already did. And maybe that monstrous feeling is not really about me at all. It’s about their own current life events and the feelings that they try not to feel, are ashamed of, are afraid of. It’s not polite of me to challenge that feeling in a social setting, I am not this person’s doctor or therapist and they didn’t ask me. It’s hard because I feel so sorry for the monstrous feeling and for the person feeling it. I am moving to compassion and love for that feeling rather than taking it as directed at me, taking it personally.

That is my intention. We will see how well it goes.

A natuopath told me to have the intention to release old grief. It’s not old grief though. It’s ongoing grief. Grief for all of the monstrous feelings that swirl around daily and the monsters that are not loved. Most people try to ignore them. I don’t. I love them, because someone has to and because they are so lonely and sad. They are crying. Don’t you hear them? That’s what love is, when you can love your own monstrous feelings and other people’s too.

And our own are the hardest.

ACE study: https://www.cdc.gov/violenceprevention/childabuseandneglect/acestudy/index.html

I took the photograph in the Ape Caves, the lava tube at Mount St. Helen’s.

new again

I get to start again

I have always seen the monsters under the bed
I have to
to survive

you don’t tell people about their monsters

I learn that early

they get angry hit punish send away
and anyhow they leave you even if they love you

when I am alone
we play
the monsters and I

they are so happy to be seen

they cry often
why doesn’t he love me?
why won’t she hold me?
why does he throw me out?
why?

I hold them
dry their tears
cuddle them
wrap them warmly

they cheer up
and play

they never forget
they alert
their person is near
they rush back

sometimes one rejected
returns with seven friends
hoping to storm the person

that doesn’t work

the monsters never lose hope
never

sometimes I see
a person see their monster
let it be conscious
the person is grown enough
to love

I am so used to the monsters
I work with them in clinic
visit after visit
the monsters weeping on my lap
while the person refuses refuses refuses
and sometimes a crack opens
like a portal light blinding
and the monster
is loved

that’s why I am here
what makes it worth staying
Beloved

now I think
I am new again
it’s hard to date
when the monsters are yanking at my skirt
crying howling distracting
and I am hopeful
but it is not my role
it’s not ok
it’s antisocial
to ask about the monsters

I am new again
I won’t date anyone with monsters
that I can see

they must love them first


all things

I went to a memorial last night, for a singer.

This photograph is from 2015, a memorial sing for my father, who sang in three or more choruses here from 1996 until 2013. Actually he was raised singing and with music. My sister and I were raised singing, too.

My father and the singer we were remembering performed folk songs locally.

We sang last night. I chose a round.

all things shall perish from under the sky
music alone shall live
music alone shall live
music alone shall live
never to die

Here is a version sung in three languages.

With each new loss we remember the old ones: I miss my mother, my father, my sister. The round comforts me: all things shall perish, yet music alone shall live, never to die.



letters

For the Ragtag Daily Prompt: letter.

I write a very careful letter to an old friend after my sister dies.

Not right after. 6 years after. Another friend tells me after my sister dies that OF says she will never ever talk to me about my sister. OF doesn’t. I don’t see her much.

I do not ask about it directly for six years.

Suddenly I am sick of it. For one thing, a family member of OF’s dies. OF asks me on the phone to come visit “And we’ll cuddle and talk about my family member.” I thought, how can you ask me to fly and visit and talk about your family member when you have not talked to me about my sister for six years? It brought all the pain back to the surface.

I write a very careful letter thanking OF for all the positive things she has done for me. She has known me since birth. She is a mentor for me as a professional woman. In other areas, no. I also write as a query, is it true that she will never talk to me about my sister?

She does not answer the query. And then tells me that she carries the letter around because it makes her so happy.

I think of the letter as a thank you and goodbye. If you will not speak of my sister to me, it hurts and it has hurt for six years. And I am done. I have been patient to the point of being completely ridiculous.

And I finally approach it directly on the phone, because I hate that branch of the friends and family gossip and triangulation. “Is it true that you will never speak to me about my sister? You haven’t for six years.”

Silence. Then: “I am willing to talk to you about your sister, mother and father, but only the good memories.”

And I say, “No.” I say, “Why don’t you ask me what sort of relationship I want?”

It is hard to leave family systems, even when they are dysfunctional and cruel. There is still love there even if it displayed by triangulation, gossip and mean rumors. It’s a love that is emotionally underdeveloped. We spend a long time trying to change, facing that the love is not loving, deciding that it is worth changing ourselves and leaving. I still love OF but I do not want to be in a relationship where she controls me and silences me. It hurts too much. I am still glad that I sent a letter with all the thanks, which I meant from my heart. And I am glad to say goodbye.

And she’s walking as if her feet hurt

For the Ragtag Daily Prompt: crepitus.

I wrote this poem thinking about my sister in 2009. I was writing on everything2.com and they had a “masked poetry ball”. We put up a second identity and part of the contest was guessing who was who. My brother in law and my sister had been on the site for far longer than me. While I was masked, my brother in law sent me a message that the poem reminded him of his wife. Yes, I thought, that poem worked, because I wrote it about her.

And she’s walking as if her feet hurt

And she’s walking as if her feet hurt
Each first metatarsal hits the dirt
Each joint feels like it’s full of grit
Bone on bone and all that shit

And she’s walking as if her feet hurt
Each first metatarsal hits the dirt
It’s no surprise, in fact it grates
To know she carries all those weights

Please rest your feet sometimes my dears
Those silly joints must last for years
One of the many dark deep fears
To walk in pain for years and years

And she’s walking as if her feet hurt
Each first metatarsal hits the dirt
I wish that she could go on home
And put her feet up all alone

I took the picture, of my sister and my son, in 1993 in Portland, Oregon. My sister injured her knee fighting fires when she was 22. Her knee worked after the surgery, but with crepitus within ten years. And her feet started to hurt.

augmenting a living will

For the Ragtag Daily Prompt: anticipate. Anticipate can mean thinking ahead.

I wrote this in 2009 under the title “Better than a living will.” I think both living wills and POLST forms help families. Do you have one?

A living will is better than nothing, but unfortunately they are written by lawyers and don’t answer key questions. The number one cause of death in the United States is heart disease. The living will usually says “if two doctors certify that I am terminal within six months, don’t use extraordinary measures.” This has three main problems. One is what constitutes an extraordinary measure? Two, doctors are usually somewhat in denial and aren’t very good at saying when someone has only six months to live: for hospice people are often referred within days of death. Three: the most common cause of death is heart disease. Think about heart disease: if you are having a heart attack, the two doctors haven’t a clue whether you are terminal in the next 6 months. Actually your heart could stop in the next 5 minutes and then they would be very comfortable saying that you are dead, but the real question is “Do you want a natural death?”

People say they want a natural death but when confronted with a form, they often are a bit squeamish. In the state of Washington we have a POLST form: Physician Orders for Life-Sustaining Treatment. This is much more helpful and practical than the living will and it is meant to augment it, not replace it. It has four questions. The first is “Patient has no pulse and is not breathing.” This means that the person is dead. Does that person want an attempt at resuscitation? Check resuscitate or do not resuscitate. I ask if people want a natural death and people agree that resuscitation is not natural. Also, if someone is in their 70s or older, if the resuscitation is successful (mostly not) they are likely to have some brain damage from lack of oxygen. People often say, “Well, bring me back if I’m going to be okay.” I say that unfortunately our higher power has not provided us with a little pop up thing like roasting turkeys have that says “Done.” We really don’t know. We may have opinions, especially if the person is 40 and otherwise healthy versus 83 and has had a quadruple bypass and died three previous times. We have 8 minutes to bring someone back, so if you want to be resuscitated, die in the emergency room. The odds are much better. Also, most of the security guards at Las Vegas casinos have brought back more people than I have, because they have the automatic defibrillators and they are quick to put them on when someone wins a jackpot, grabs their chest, and keels over. If someone asks what I would do if I were them, I do answer. It depends on age and health. As a doctor I want to bring someone back if they are reasonably healthy and there is a decent chance. I don’t really want to do CPR on 90 year olds because it doesn’t work and their ribs break. Ick.

I once was doing a form with an elderly couple. The husband had already had more than one heart attack and he had been resuscitated from a cardiac arrest once already. I asked about a natural death and if he wanted to be resuscitated again and he said, “No, I don’t want that.” His wife elbowed him, “Yes you do.” He said, “I do? Why?” She said, “You have to stick around to take care of me!” He said, “Oh, okay. Yes, I do.” He WAS taking excellent care of her: she had by then had “end-stage” emphysema since she had come to our clinic 12 years earlier. I asked the pulmonologist how that could be and she said, “Some people are just wrapped in cotton wool by their families and they can stay around for years.” I don’t mind if someone wants to be recusitated even if I think it’s medically futile, because most people make sensible choices. If someone is really frightened of death, at a certain point no doctor can keep them around if the body has stopped working. There are really very few cases like comas or brain injury where someone can be kept alive on a machine. It is extremely rare.

I was discussing the choice with a woman in her 80s and her daughter and the 80 year old said, “I don’t want to think about this.” I said, “It may be uncomfortable to think about, but if you don’t tell me and your daughter what you prefer, we would have to guess. We don’t want to guess and we would probably err on the side of doing too much.” She grimaced, but she did make the decisions. The POLST form and living will are only used when we can’t ask someone, so a person who can talk can change their mind.

Question two is “Medical interventions”, asking how much intervention you think you would like. There are four levels on our revised form. The most interventional is defibrillation (shock), intubation (ventilator) and CPR. Since I live in a rural area, I also have the luxury of asking whether people want to be transferred to a big hospital. I explain that I can use medicine for a heart attack, but I don’t have a heart doctor or surgeon and I can’t do stents or surgery or bypasses or anything besides medicines and oxygen. Sometimes being rural protects people who don’t want much intervention, since the cardiologist and pulmonologist and gastroenterologist aren’t down the hall. Who would refuse to be transferred? A man who had two previous heart surgeries said, “I don’t want to wake up with that scar on my chest again. It hurts.” A frail man in his upper 80s had pneumonia and a tricky heart and kidneys. We said that we were family doctors and a cardiologist and nephrologist and pulmonologist would no doubt do more and they could do some monitoring that we couldn’t. He said, “Do the best you can for me here. I trust you and my family is here and I will either pull through or I won’t.” Four days later we told the family that he wasn’t. If we protected his lungs and heart from too much fluid, his kidneys failed more, and if we helped his kidneys, he couldn’t breathe. We changed to comfort care and he was surrounded by his family. I think that we all felt comfortable that we had given him the most respectful care possible and had honored his wishes. The second most interventional choice on the form is “All care above and consider oral/nasal airway, bag-mask/demand valve, monitor cardiac rhythm, medication, IV fluids.” The least interventional is comfort care only: “Oral and body hygeine, reasonable efforts to offer food and fluids orally, medication, positioning, wound care, warmth, appropriate lighting and other measures to relieve pain and suffering. Privacy and respect for the dignity and humanity of the patient/resident. Transfer only if comfort measures fail.” I like the thoroughness of the comfort measures.

The third question is “Antibiotics”. Three choices: no antibiotics unless needed for comfort, no invasive(IM/IV)antibiotics or full treatment. Who would choose no antibiotics? Sometimes someone with end stage cancer or a very disabling disease, like Lou Gehrig’s. Someone with a terminal illness who is not going to get better and is ready.

The fourth question is “Artificially Administered Fluids and Nutrition.” Three choices again: No feeding tube/IV fluids (provide other measures to assure comfort), no long term feeding tube/IV fluids (provide other measures to assure comfort), or full treatment. Most people choose the second. Most people would like nutritional support if they have a reasonable chance of getting better. An elderly frail person with pneumonia sometimes needs iv feeding, or after surgery or after a bad accident. Most people do not want long term feeding by iv or tube if they are in a coma or have severe brain injury to the point where they can’t even eat.

I am very happy to have the POLST form and it is an excellent augmentation to the living wills. It is very comforting to families as well. If a widowed mother has discussed her decisions with me and signed the form, then it doesn’t fall to her three children to make decisions about how much care to give. She has left them and me a map and guidelines and we try to follow them as best we can. We are not left with the fear that maybe we did too little and that we should have done more. The hardest decision with a loved one is when to stop intervening.

I want the POLST form to have one more section. Question five: “Memory loss”. If you have lost your memory to the point where you no longer recognize family, you have forgotten personal hygiene and toilet training, you may not even be able to speak any more, do you still want other things treated? My answer is no, for me. Too many of our hospital patients are frail, elderly, demented and the hospital confuses them. They often call out or cry or scream at night because it is frightening to be in another place and they don’t like having their blood drawn. Sometimes we have to drug them or use restraints in order to treat the pneumonia or urinary tract infection. I really wonder how ethical it is. The problem is that by the time they have lost their memory, they can’t really say, “no, don’t keep treating me.” Except for one woman. I have one lovely woman who has been at our nursing home for more than 4 years. She realized that she was losing her memory and said to her husband, “I don’t want any drugs, no ivs, no feeding tubes ever. And I never want to go to the hospital again.” He visits her every day and talks to her. Sometimes she won’t let me examine her on my routine visit, but that is okay. Once she ran a fever of 102 for two days and didn’t eat or drink anything. I checked with her husband and he stuck with her wishes. The fever went away and she got better. I am so happy that she doesn’t have to have medicines or any blood draws or anything that she doesn’t want. Another woman told me that she’d gone to our hospital family group on death and dying. Her husband had lost his memory and was in a nursing home, having gotten to the point of not recognizing her and not remembering toilet training. She said that the group said, “He’s not dead.” and weren’t very welcoming. She said, “They don’t understand. He’s left his body and all I have is the live shell. He’s really gone and he left slowly, bit by bit. They don’t understand that the part that was him IS dead.”

I don’t think that doctors are terribly good at doing POLST forms with people. For a while I thought it was because my partners were younger than I was. Then I moved to a clinic where two doctors had left and they were both older than me. They had lots of people over age 65 and practically none of them had POLST forms. I’m not saying that people under 65 should not have a form. They really should, especially if they care about that coma scenario. But I REALLY think that people over 65 should have a chance to address this. Our form is bright green and after it is filled out I scan it into the computer and then the owner is supposed to put the original on his/her refrigerator, where the ambulance crew knows to check for it. Someone still might end up with a ventilation tube temporarily, if they become unconscious in a public place and the crew has no guidance. They too have to err on the side of doing more rather than less. I theorize that doctors’ discomfort with the POLST form stems from a mostly unconscious idea that their job is to “make people better.” I have been interested in end of life issues since medical school and it occurred to me that if I thought of my job as to “save” people or keep them alive, then I was going to have a 100% failure rate, because actually everyone dies eventually. Instead I thought that my job was to help as best I could with a good life and a good death. It is turning out that no two people define a good death in the same way. It is entirely individual. My job turns out to be partly about telling people and families when I think death is approaching and helping them define their good death.

To see if your state has a POLST form: https://polst.org/