Love whole

I loved my liar sister
I love her still

That’s what makes them angry
that I love my liar sister
even though she lied
even though she hurt me
even though she lied to them

That’s what makes them angry
that I love my liar sister
they want to love her lies
they don’t want to know the truth
they want to hide from lies

That’s what makes them angry
they are hella jealous
they want to be loved like that
they want to be loved whole
they want to be loved entire
they want to be loved even when they lie

That’s what makes them angry
they are so afraid to be themselves
they are so afraid to tell the truth
they are so afraid to be honest with each other
they are so tired of hiding

That’s what makes them angry
one says she will be friends
if we only talk about the positive
about my mother, father, sister
I counter: let’s not mention them at all
nor your husband. Not a word.
She doesn’t answer. Silence.

That’s what makes them sad
they don’t want to feel the anger
they deny the heartache
they avoid the longing
they bargain with their souls
they refuse to feel the grief

let us feel the anger
let us feel the heartache
let us feel the longing
let us feel our grief
let us feel our souls

Beloved, we long for you so

Please, Beloved, love us whole

_____________________

My sister sent me a t-shirt from Wicked. She died of cancer in 2012. The deaths from Covid-19 and every death brings her back to me. And this song sums up our relationship.

website ethics and mine

Two days ago I wrote to the owner of the website that “separated” me for “not explicitly breaking the rules”.

I have not gotten an answer.

Doesn’t matter, you say. I disagree. I think our ethics matters and it matters on line. Isn’t that part of what we are fighting about?

Let’s drill down. The editors stated on this obscure not to be named site that they were tightening rules and removing write-ups that should be logs or are just not high enough quality, and letting the writers repost them as logs. So far they have removed over 250 of my writeups. Ironically, I was one of the two most prolific writers in the last year. Let’s kill the golden goose because she’s annoying, won’t we? The other writer has not been “separated”.

I note that they have removed my write up called “birth of ——–“. Now, this interests me. This was a well received write up, had up votes, and was the start of a category. The category was people explaining how they chose their on line name.

So: the editors are liars and abusing their power. They have removed a well received and well liked write up because they have personal animosity towards me. I have protested the removal of 250+ writeups and asked that they be reposted as logs. No answer.

The other writeups in the how I chose my name category are still there. So this is PERSONAL and the editors of the site are unethical.

Therefore, I hope the site dies. Or gets rid of those editors. I think I want it to die, even though it has writing by my sister. This does matter. As a species, we will either learn to be fair and human on line as well as off line, or we will end in conflagration. The site will certainly not be there if we start lobbing nuclear bombs at each other. The owner works for the US government. Why is he/she not paying attention to this obscure website that he/she owns?

Whether or not the world burns this month, if the editors are manifestly unfair on the site, the site will die and deserves to die. I wish that I could have my sister’s drafts before it shuts down.

I ended my email that is not answered with this: Good luck. I hope that ethics matters to both of us.

Thank you.

on line site name

_______________________

I will not name the site here or anywhere again, until and unless those editors are shut down and the site becomes ethical.

We are fighting this fight as a species, as humanity. We have to learn to be as ethical on line as we are in person. Well, you say, some people AREN’T ethical. Yes, that is true. As a rural physician, my goal is to take care of ANYONE WHO COMES IN. The emergency room physician cares for the family of four hit by the drunk and the drunk too, even if there is a dead child in the family of four. We set our judgement aside and do the best for each and every patient, regardless of the story. At least, that is the goal. It is the highest goal I know of.

Blessings and be your ethical self on line. As my children said to me when I threw their father out of the house once, “We don’t care what he does. We want you to be polite to dad no matter what.” And they were RIGHT! We answer to ourselves and to the Beloved and to our children.

Blessings.

The photo is me and my sister, dancing before my wedding in 1989. She died of cancer in 2012.

On The Edge of Humanity Magazine

Huge thanks to The Edge of Humanity Magazine, for publishing two essays.

The first one on May 9, 2022, that abortion must remain legal for women’s health:

The second today, about behavioral health in a pandemic and war. As caring humans, how could we NOT respond with distress to the suffering and deaths from both Covid-19 and disasters and wars?

I am so delighted to be featured on this platform. I enjoy so many of the artists and writers and poets who are featured there and I am very happy to contribute!

Upstage

I am reading Kim Addonizio’s Ordinary Genius, A Guide for the Poet Within, for a class. In the chapter about cliches, she suggests choosing a cliche and playing with it. The first example on her list is “A sudden fear gripped me”, so she inspired this:

Upstage

A sudden fear gripped me by my nipples
I hear my mother: Colder than a witch’s titty
Why must the witch’s titties be cold?
Must they dance naked even in the bitter winter?
Can a witch retire at a certain age
Sit warm, clothed, with her cat and tea
By a fire with enough fuel for winter?
You’d think they’d get pneumonia dancing naked
In any weather; yet witches are usually old.
Maybe it acts like jumping in to cold water
To dance around a Beltane fire; maybe witchery
is hot work and they aren’t cold at all.
Maybe a witch’s titty is warm all the time
And meanwhile the fear is gone, upstaged by titties.

Fibbing Friday in the movies

  1. Finish the quote: One of Arnold Schwarzenegger’s most famous lines is, “I’ll be…” “I’ll be PEEEEACE!”
  2. Finish the song title: One of Randy Newman’s best known songs is “Why Can’t We…” “Why Can’t We Peace Each Other!”
  3. Twilight wasn’t about a teenage girl who falls in love with a vampire. What was it about? The Forks Vampire/Human/Werewolf Peace Consortium that healed the entire world.
  4. What made Blade different from the vampires he hunted? He changed his name from Blade to Peace and his very touch brought peace to the hearts of the world of Vampires.
  5. In what movie did Billy Crystal play a character named, Miracle Max? WORLD PEACE IS HERE
  6. The Goonies wasn’t about a group of kids searching for a lost treasure. What was it about? Some silly kids who start a peace movement in their neighborhood and end up leading the UN.
  7. What was name of the character than Alan Rickman played in the first movie that he starred in? PEACEMAN.
  8. In The Professional, who does Natalie Portman’s character shoot with a paint pellet? The Horseman of WAR. Peace ensues.
  9. The Phantom of the Opera isn’t about a disfigured man who terrorizes a Paris opera house. What is it about? A Peace Phantom who keeps changing the tragedies into Joyous Hymns to Peace.

For Fibbing Friday.

first impressions

I am taking a writing class and our next book is on cultural appropriation.

This interests me. I tend to be a little gender blind and race blind when I meet people. I am using my super skill instead. My skill is developed from a really scary childhood: I read the stuffed emotions. The stuff people are hiding.

No way, you say. Oh, yes, I say.

My sister described coming home from high school and stopping when she walked into the house. She was trying to sense what was going on. Were our parents fighting? Was our father drunk? Yes, he was drunk, but which stage?

We talked about the stages and which we hated most.

Stage goofy/silly was annoying but not toxic. We said we had homework.

Stage asleep in a fetal ball in the upstairs hallway. My sister said she would step over him to get to her room.

Stage maudlin. We both agreed this was the worst. He would cry and say, “You can tell me anything.” Once he caught me in that stage and I was in tears by the time my mother got home. I left the room. The next morning mother said, “He said you two were discussing the cat’s disappearance.” I didn’t answer. We never said a word about the cat. I didn’t know if he was lying or was too drunk to remember it the next day, so made it up. Don’t care. Avoid.

He was never physically abusive. He and my mother would scream at each other at 1 or 2 am through most of high school. Reading her diaries, she writes that she drinks too much. I think they were both alcoholics, thought the family story is that he was the bad one. But I can’t imagine yelling with a drunk at 1 or 2 am for an hour. What is the point? They are drunk. So either she was drunk too or needed to fight.

Emotionally abusive, yes, both parents. My mother would take any show of fear or grief and tell it as a very very funny story to every person she ran into. Is it any surprise that I had to go into therapy after she died to learn to feel fear or grief? My sister would say, “She’s got her stone face on,” about me. Um, yeah, I am NOT going to let my family see my emotions…

Anyhow, that is what I read in people when I first meet them. It’s not the suit, the clothes, the make up, the race, the gender. I pretty much ignore those. I was fashion blind in junior high, a girl geek, could not read the code and did not care. I had given up on socializing with my fellow students. I was hopelessly bad at it. I did a lot better with the adults around my parents. I could have actual conversations with them.

I had one patient who was transgender where I couldn’t remember which direction. I didn’t care, either. That was a really angry person. Anger is always covering other emotions, so I avoided pronouns and tried to be as gentle as possible.

I complained to a counselor once that I can’t turn this “off”. And that it’s fine in clinic with patients, but it screws with my relationships with my peer doctors. They do not like it if I “read” them.

It took me years, but I finally realized that I have to use my clinic skills with everyone. I can’t turn off “reading” any more than you turn off your eyes when you meet a new person. But I can be as gentle with everyone as I am in clinic. I realized that as I started on a trip and the trip was amazing, everyone was so nice.

This reading is a product of a high ACE Score: Adverse Childhood Experiences. I score about a 5. One of my patients set off my ACE alarms on the first visit. I asked if he had had a rough childhood and gave a very short explanation of ACE scores. “Oh, I am a ten out of ten,” he said. He was, too. Ran away from home at age 6 or 8.

The ACE scores of all the children are rising from the last two years. The war will raise them even more, worse for the children there and the kids trying not to starve in Afganistan and Syria and world wide.

It will be interesting to read about cultural appropriation. But I don’t care much: I don’t “see” those things when I meet someone.

Hugs and blessings.

The photograph is me and my sister Chris in 1987, before my wedding. We were dancing before the wedding. She died in 2012 after 7 years of breast cancer.

Doctors and nurses and hospital staff are the last caregivers for the elderly alcoholics and addicts who are alone, whose families have finally cut them off. I think this song illustrates their pain. We try to take care of them.

abuse, enabler style

I am raised by a family of triangulating enablers and enablees.

The enablers are my mother and two uncles. They are very very smart. Let me qualify that: they are very very smart intellectually. Emotionally, not so much.

The two uncles have PhDs and are professors. They marry wives that are lessor in their view. One tells my mother that he wants a woman who is not as bright as he is. I don’t know if she is less bright, but she is a hella better athlete. I also have the impression that she had a time where she drank too much.

The other uncle marries a woman who tends to be a hypochondriac. He takes her to India, where she gets polio while pregnant. She is then a sick hypochondriac, which is very difficult. The ill can control their families by planning things and then getting sick at the last moment. On the other hand, chronic fatigue and fibromyalgia are very real and we are on the edge of figuring them out. That uncle divorces his wife and I instantly like both of them better. They stop being a weird unit and are suddenly individuals.

My mother tells me, when I am in college, “I wondered if your father was an alcoholic when I married him.” I want to hit her. She won’t leave him, she won’t stop enabling him, they scream at each other at 2 am often. Now I wonder about that and conclude that either screaming at someone was something she needed or she was an alchoholic too.

After my mother dies, I ask my uncle, what about his parents? After all, the three of them learned enabling somewhere and it pretty much has to be at home.

My uncle tells me his parents had a PERFECT marriage and that my grandmother LOVED being the wife of a physician and professor.

Um, so, then, why did she pay my tuition to medical school, uncle?

And I think about my mother’s stories. Once, she says, your Uncle Jim bet his friend Dick that Dick was too chicken to shoot a cigarette out of Jim’s mother’s mouth. Ooooo. With a rubber band shooter. Yes, my grandmother. Bob took the bet and succeeded. My grandmother roared with anger and the two boys ran like hell and hid.

And someone in the family tells me: your grandfather helped your grandmother control her temper.

There it is. The enabler/enablee.

The enablers die first. My grandfather of cancer at 79, my mother of cancer at 62. The cousins are all angry at me because I won’t follow the family rules and triangulate in a satisfactory manner, and I don’t care any more. I am ignoring them. I got my father’s banjo back and I am done. The two cousins I own land with jointly are not the worst triangulators.

I have to remind myself: for them, this is love. For some people, controlling or being controlled is what functions as love and intimacy. Fighting and tears when person A talks to person C about person B and person C then lets person B know, that is how they feel close. It is not only families, but communities. Clay Shirky’s description of a group being it’s own worst enemy describes the same patterns: identify an enemy inside or outside the group and then everyone comes together against the enemy. The enemy says the wrong thing, doesn’t worship the right god/desses, wears different clothes, looks different. And the group feels safer once the scapegoat has been killed, the guy has been burned. It would be nice if we could burn a ritual guy instead of torching each other.

The real anger is in the enabler. They control it by having the enablee express it. Then it is not “theirs”. They can feel superior to the enablee who is out of control. Sadly, the problem is only fixed temporarily and they will need their anger expressed again and again and again.

The cycle can be broken. It is a lot of work.

Blessings.

______________________________________________

Covid-19: Approach to Long Haul

Covid-19: Approach to Long Haul

This is written primarily for physicians, but is for anyone to read. This is a working theory.

I am very interested in Long Haul because I was diagnosed with PANS by an older psychiatrist who worked exclusively with physicians in 2012. That was during my third flare. The evidence is mounting that Long Haul is an autoimmune disorder like PANS. I am sharing my approach to Long Haul based on both my clinic and personal experience.

Step 1. Validate the patient. Patients are terrified, understandably, to have something “like” chronic fatigue, fibromyalgia, or are worrying that they are “crazy”. Evidence is appearing that Long Haul, chronic fatigue and fibromyalgia are all complex autoimmune disorders with multiple antibodies. We do not yet have vast antibody tests. So the first step is to say that we believe patients and also that we can help. This is a very new and evolving field. I tell patients that it will change fast over the next few years. What I tell them today may change within a year as we get new information. If this makes them anxious, remind them of the Women’s Health Initiative and how that changed hormone therapy, and that cancer treatments keep improving.

Step 2. Lower stress and antibody levels. When we are high stress, cortisol and adrenaline go up and impair the immune system. The immune system is fired up and looking for something to do. Bacteria like strep A have evolved with us and have surface proteins that “look like us”. Our bodies make antibodies to the Strep A or Covid-19 and sometimes those antibodies attack us too, because our own proteins look the same. One way of lowering the antibody level is sweating. Hot bath or shower, sauna, hot tub, exercise. Support these and explain. A second way to lower the antibody level is to quiet the sympathetic nervous system and activate the parasympathetic nervous system. The parasympathetic is the quiet, relaxed and laughing one. Where does the patient feel safe, relaxed, quiet? After my father died, leaving a complicated and messy estate with an out of date will, I did a Sudoku daily for a year. I realized that the Sudoku relaxed me because I could not solve the estate quickly, but I could nearly always solve the Sudoku. Stupid cat videos, rocking chairs, knitting, gentle walk in the neighborhood if it feels safe, a walk in a mall (without one’s purse if overspending is an issue) — how does this particular person relax? Teach the slow breathing: in for a slow count of five and out for a slow count of five. Or square breathing: in for five, hold five, out five, in five. Twenty minutes of slow breathing supposedly moves almost everyone from sympathetic to parasympathetic. It may take practice and feel unfamiliar: I have had a veteran say that it felt very very weird to relax and he was not used to it. He kept at it.

Step 3. Symptom picture. At present I am basing this on my own experience with PANS. This is my working theory. Antibodies can block receptors or “turn the key” and activate receptors. Buprenorphine does BOTH (though it is not an antibody): at lower levels it turns the key and at higher levels it blocks. I would ask specifically about five fields. You many well be able to come up with more.

a. Brain function. In my PANS, I have antibodies to dopamine that turn dopamine on very high. Other physicians assume that I am manic. I am not quite manic, but it certainly feels awful. I feel like I have been shot out of a cannon when I wake up, with the morning cortisol rise. For me, the caffeine in coffee calms me, and my assumption is that it displaces the anti-dopamine antibodies. Tea does not work. I quit coffee for seven years until the latest flare. Albuterol doesn’t work. Terbutaline does work. I don’t know about theophylline or adderall, I have not tried them. If someone has “brain fog”, I assume that they have blocker antibodies OR be sure to ask if they were different in the first 4-6 months of the illness. For me, the antibodies rise for about 2-3 months and then take 2-3 months to drop. I have a lot of fatigue when they finally leave and this time I could tell the day that the last antibodies “fell off” or dropped to my “normal” level.
For blocked people, does caffeine help? How about albuterol? Adderall, theophylline, SSRIs. Every person will have different antibodies. Treatment needs to be tailored.

b. Muscle function. My anti-tubulin antibody (I have PANS, remember?) shuts down my “fast twitch” but not my “slow twitch” muscles. Tubulin is what makes the lung cilia function, so presumably mine are paralyzed during a flare and that is why I get pneumonia. I am tachycardic, resting heart rate 100 and walking slowly or talking heart rate 135, so I get very short of breath. Both the lung dysfunction and antibodies that upregulate my dopamine receptors make me tachycardic. I think that the people who can barely get out of bed with chronic fatigue have both fast and slow twitch muscles blocked. They need validation and lower stress. With support, perhaps the antibody level can be lowered enough that they can function again. I also found that my muscles hurt when my blood sugar was up and that if I keep it low, I have minimal muscle pain. I do not know if this is true for other people.

c. Gut function. In PANS, there appears to be an antibody to lysoganglioside. I don’t understand it but when I am sick, I cut carbohydrates way back or I am horribly ill. I tolerate lactose but not fructose, sucrose or gluten. One year after getting my last flare, I can eat everything except gluten. With this round I figured out that rising blood sugar when I am sick makes me acidic. This in turn worsens lung function more, as my body automatically slows my breathing to balance the acidity. I found that taking bicarb before a meal helped tremendously. In the worst/highest antibody part of the flare, I eat fats, because anything else makes me ill. SO: what can the patient eat or not eat and support them. Food intolerances are on the rise. Ask if there are foods that they cannot eat and support them not eating them. They can go to a very restricted diet that works for them and wait three weeks. After three weeks, food antibody levels are supposed to drop. They can start adding foods back in, one every three days. I do not know if this will work in a bad flare, the antibodies may be too high.

d. Lungs: do a resting heart rate and oxygen saturation. Do a walking heart rate and sat. Then do a LOADED heart rate and sat, with the person carrying the equivalent of two bags of groceries or their toddler. If they are young, they may hold their sats, but if their heart rate jumps to 135, that is like running a continuous marathon. Try oxygen and see if the heart rate comes down. Sleep apnea testing is also highly recommended. If they are tachycardic with daily activities, of course they have fatigue! Rest. Patients can learn to check a pulse or have a pulse ox, but fingers and second hand are cheap.

d. Other. I am reading that the main complaints in Long Haul are fatigue, brain issues, tachycardia and shortness of breath. What else really bothers the person? Sound sensitivity, loss of the sense of smell. The first step in helping with this is to listen and validate.

Covid-19: aftermath

I am thinking about the roaring twenties a lot. I think people went a little nuts, not because of the war, but because they had difficulty being emotionally honest about the influenza pandemic. I think we humans will do it again to forget the deaths, to go into denial, to refuse to grieve.

Yes, that is my prediction.

Be very quiet, I am hunting wabbits.

Be careful in our future roaring twenties. Money will flow like honey and people will go nuts. Hold fast, hunker down, don’t go out without your macintosh, wear clean underwear. Remember what your mother told you, remember what your father tells you. Because that was followed by the Depression and that is one risk.

I don’t know if it will start this spring or next spring. Ok, I AM hoping that my son and future daughter-in-law can get married in early May, since they’ve put it off for two years. But. The 1918-19 influenza was really three years, not two. It tailed off. Half the people in the world got it. In Samoa, half the adults died, or was it 70%? They had little exposure to infection but a ship brought it. They KNEW they were high risk, but a sailor didn’t know he was sick yet.

Why a roaring twenties? Because we want to forget this pandemic, as the last one was forgotten. Our history books say that the Roaring Twenties was about the end of World War I. We teach lots about that. We barely mention the influenza world pandemic. I am reading a book about the 1918-19 influenza pandemic published in 2018. The author says that it is only now, 100 years later, that we are starting to really tell the stories of that pandemic. She gathers stories from all over the world, including stores of different infection control strategies in two cities. One guessed right and one guessed wrong, and in the wrong one, way more people died.

I read about that 1918-19 pandemic after influenza nearly killed me in 2003. I was 42, healthy, a physician, a mother, an athlete. I had NO risk factors except stress. Now it looks like it was a PANS reaction, but at the time, neither my doctor nor I could figure out why I was short of breath and tachycardic walking across a room for two months. Fatigue, chest pain, tachycardia, shortness of breath. Hmmm, what does that sound like? My partners thought I was faking and I was so sick that I could barely communicate. The stresses were my mother dying of ovarian cancer in May 2000 and my marriage being pretty on the rocks and me working way too hard. My psychiatrist said I should take time off. I said, I can’t. He said, you’d better. Then I got flu. “See?” he said. The body decides, not the conscious brain. He was correct, damn him.

The book I read in 2004 looked dry and medical from the outside. It had pages and pages of footnotes. It had photographs of Los Angeles. They knew the influenza was coming towards them like a wave and they tried to get ready. Bodies under sheets were stacked five deep in the hallways of the hospitals. It hit that fast. People, usually age 20-50, turned blue and fell over dead. WHY? It was the immune response. The 20-50 year olds had a better immune response than the 50 and older and their lungs would swell until there was no airspace left. Even then, that pandemic death rate was only 1-2 % in the US. But it was so fast and spread so quickly that everything was disrupted because it was the workers that were deathly ill and at home and there was no one to work.

People wore masks in public, except for the mask refusers, but not in their homes. So entire families would get ill. I don’t think they had figured out viral loads yet. If you are the last one standing, and you are trying to take care of a spouse and six children, you were high risk from viral load and exhaustion.

The Roaring Twenties WAS a way to grieve, it’s just a dysfunctional one. The stages of grief: denial, bargaining, anger, grief and acceptance. My sister said that acting out and revenge ought to be added as stages of grief. She died of breast cancer after fighting it for 8 years. Roaring is denial and bargaining and acting out and revenge, all at once. Everyone grieves differently, remember that. There is not an order to the stages of grief and you don’t do them once. You do them over and over and over.

I am a Cheerful Charlie, right?

War is one way to forget/deny/act out. Let’s not do that. Let’s not have a civil war of forgetfulness and denial.

Let us remember clearly and lean on each other.

Playing for change: lean on me

I think this fits the Ragtag Daily Prompt: inflammable.

My sister’s blog: https://e2grundoon.blogspot.com/2009/01/chemo-not-in-vain.html . She died on March 29, 2012. The start of the blog is here: https://e2grundoon.blogspot.com/2002/02/ .

Blessings.

______________

I got Cheerful Charlie from Pogo comics: read the Albert Alligator section. https://comicstrips.fandom.com/wiki/List_of_Pogo_characters
More recently, Downton Abby used Cheerful Charlie. https://downtonabbey.fandom.com/wiki/The_Cheerful_Charlies