Thank you for the music

I have been in Rainshadow Chorale since 2000. My father, Malcolm Ottaway, was one of the eight people who started it in 1997. He and my mother moved here in 1996. My mother, Helen Burling Ottaway, died of ovarian cancer on May 15, 2000. Rainshadow agreed to sing a Byrd Mass for my mother’s memorial. My father asked if my sister and I could sing in the chorale for the memorial. We were told yes. I had moved to Port Townsend at the end of 1999.

After the Memorial, I asked if I could stay in the chorale. The answer was yes and I have been in it ever since.

Our director, Rebecca Rottsolk, is retiring from the chorale after our next concert. She has picked favorite pieces. I have sung in nearly every concert since 2000, though I couldn’t sing in the one right after my father died in 2013. He followed my sister, who died in 2012. My throat wouldn’t let me sing that one.

So Rebecca, thank you for the music and thank you for being a wonderful director and forcing us to level up over and over. I am sending you peace and love and joy.

And everyone else, put this concert on your calendar.

Rainshadow Chorale practicing outdoors wearing masks in a fine rain. Dedication.

For the Ragtag Daily Prompt: thanks.

Adverse Childhood Experiences 12: welcome to the dark

Welcome to the dark, everyone.

When you think about it, all the children in the world are adding at least one Adverse Childhood Experience score and possibly more, because of Covid-19. Some will add more than one: domestic violence is up with stress, addiction is up, behavioral health problems are up, some parents get sick and die, and then some children are starving.

From the CDC Ace website:

“Overview:Adverse Childhood Experiences (ACEs) are potentially traumatic events that occur in childhood. ACEs can include violence, abuse, and growing
up in a family with mental health or substance use problems. Toxic stress from ACEs can change brain development and affect how the body responds to
stress. ACEs are linked to chronic health problems, mental illness, and substance misuse in adulthood. However, ACEs can be prevented.”

Well, can they be prevented? Could Covid-19 be prevented? I question that one.

I have a slightly different viewpoint. I have an ACE Score of 5 and am not dead and don’t have heart disease. I spent quite a bit of time thinking about ACE scores and that it’s framed as kids’ brains are damaged.

I would argue that this is survival wiring. When I have a patient where I suspect a high ACE score, I bring it up, show them the CDC web site and say that I think of it as “crisis wiring” not “damaged”. I say, “You survived your childhood. Good job! The low ACE score people do not understand us and I may be able to help you let go of some of the automatic survival reactions and fit in with the people who had a nice childhood more easily.”

It doesn’t seem useful to me to say “We have to prevent ACE scores.” Um. Tsunamis, hurricanes, Covid-19, wars… it seems to me that the ACE score wiring is adaptive. If your country is at war and you are a kid and your family sets out to sea to escape, well, you need to survive. If that means you are guarded, untrusting, suspicious and wary of everyone, yeah, ok. You need to survive. One of my high ACE Score veterans said that the military loved him because he could go from zero to 60 in one minute. Yeah, me too. I’ve worked on my temper since I was a child. Now it appears that my initial ACE insult was my mother having tuberculosis, so in the womb. Attacked by antibodies, while the tuberculosis bacillus cannot cross the placenta, luckily for me. And luckily for me she coughed blood at 8 months pregnant and then thought she had lung cancer and was going to die at age 22. Hmmm, think of what those hormones did to my wiring.

So if we can’t prevent all ACE Scores, what do we do? We change the focus. We need to understand crisis wiring, support it and help people to let go of the hair trigger that got them through whatever horrid things they grew up with. 16% of Americans have a score of 4 or more BEFORE Covid-19. We now have a 20 or 25 year cohort that will have higher scores. Let’s not label them doomed or damaged. Let’s talk about it and help people to understand.

I read a definition of misery memoirs today. I don’t scorn them. I don’t like the fake ones. I don’t read them, though I did read Angela’s Ashes. What I thought was amazing about Angela’s Ashes is that for me he captures the child attitude of accepting what is happening: when his sibling is dying and they see a dog get killed and he associates the two. And when he writes about moving and how their father would not carry anything, because it was shameful for a man to do that. He takes it all for granted when he is little because that is what he knows. One book that I know of that makes a really difficult childhood quite amazing is Precious Bane, by Mary Webb. Here is a visible disability that marks her negatively and yet she thrives.

A friend met at a conference is working with traumatic brain injury folks. They were starting a study to measure ACE scores and watch them heal, because they were noticing the high ACE score people seem to recover faster. I can see that: I would just say, another miserable thing and how am I going to work through it. Meanwhile a friend tells me on the phone that it’s “not fair” that her son’s senior year of college is spoiled by Covid-19. I think to myself, uh, yes but he’s not in a war zone nor starving nor hit by a tsunami and everyone is affected by this and he’s been vaccinated. I think he is very lucky. What percentage of the world has gotten vaccinated? He isn’t on a ventilator. Right now, that falls under doing well and also lucky in my book. And maybe that is what the high ACE score people have to teach the low ACE score people: really, things could be a lot worse. No, I don’t trust easily and I am no longer feeling sorry about it. I have had a successful career in spite of my ACE score, I ran a clinic in the way that felt ethical to me, I have friends who stick with me even through PANDAS and my children are doing well. And I am not addicted to anything except I’d get a caffeine headache for a day if I had none.

For the people with the good childhood, the traumatic brain injury could be their first terrible experience. They go through the stages of grief. The high ACE score people do too, but we’ve done it before, we are familiar with it, it’s old territory, yeah ok jungle again, get the machete out and move on. As the world gets through Covid-19, with me still thinking that this winter looks pretty dark, maybe we can all learn about ACE scores and support each other and try to be kind, even to the scary looking veteran.

Take care.

even if

even if

I never see you again
you never speak to me again
you never love your bearish parts
you never let yourself get angry
you never let yourself get sad
you never let yourself feel
you tell yourself you are happy
you tell yourself everything is the way it should be

even if

I never see you again

I still love you
I still forgive you

I still love you

I hope that you truly do

find happiness

Letter to a younger friend

After my mother died I really struggled, partly because I was in the midst of a divorce and felt like a massive failure. I did not like myself. But I kept thinking about my mother and how much she hid: and eventually I thought, you know, I love all of my mother. Even the stuff she hid. If she is lovable then so am I.

What is lovable in your parent? And would you miss her/him if she/he were truly gone?

That is the hard thing for me, that I couldn’t think about that until she was dead. With my sister, I thought about it before she died and changed how I behaved and let her know when I disagreed with her. Even though she had cancer.

Isn’t the greatest gift we can give each other loving honesty? I love you and I disagree with you and I am not going to do what you want just because you (are my mother/are my father/have cancer/have emphysema/want it/are dying). Isn’t the greatest gift to be ourselves and take the flack for it?

Cucumber love is a poem I wrote more then ten years ago about dropping the exoskeleton that we wear for society’s and our family’s approval. It takes courage. You can drop a little piece at a time and let them get used to it. And yes, some people may reject you for good. That is their choice. But you have to ask yourself then, did they ever really love you or did they only love to control you?

Cucumber love

They say they love you
And they do

Sort of

One day you find yourself
Wearing a construct
An exoskeleton
Awkward
You can move
See out

You built it slowly over years
Because that’s what you were told to do
You wanted to be loved
It made you feel safe

There is praise
Or at least pressure to keep it on
You may not have known it was there
And slowly begin to feel
Who you really are
Awaken to the shell

One day you slip out

They are still saying how much they love you
To the empty construct

You watch bemused
For a while

You say “That isn’t me.”
“Of course it is,” they say

“I’m over here,” you say

Shock and outrage
“That’s not you!
You’ve changed, you’re depressed
Confused, manic, gone out of your mind!”
Off the deep end

You might even go back in to
the construct for a little while

But now you’ve tasted freedom
You won’t be able to stand it for long
You will be out soon

Some people will see you as you really are

Some people will tell you they still love you
But as they say it to the construct
They act as if you’re still wearing it
They still think you love cucumbers
Though you ate that dish once to be polite
They hold the construct in their minds
Even after you’ve destroyed it
And behave the same as they ever did

As you walk away
You will wonder who they loved

outfits inappropriate for work 3

Ok, maybe it is not inappropriate for work. But it would be a little weird for work… I was going in the woods with my oxygen tank. “Local doctor of 21 years found eaten by cougar, which then died because it couldn’t digest the oxygen tank.” Heh.

Listening to this, fabulous!!!

Game ball

Warning: this post contains some time out words.

How do I process the game you played?

I am the subject of the game.

Or the victim.

Or no, I refuse. It is your game. I was not playing. I am the honey badger, metabolism so fast that I have to run from one meal to the next or else I will starve. I eat whatever I can find: cobras, bees, anything. I eat or I die.

You have tethered a honey badger to oxygen by playing a game.

I am the football and you have been kicking me, throwing me, catching me, slamming me to the ground as hard as you can in the end zone.

And now that I am worn and damaged and torn, you’ll toss me away, not even notice me, and find a new ball.

You will need a new football. To play with.

I don’t envy that person.

The truth is, it will be one of you. The group will rest on their laurels, oh, we nearly killed her, wasn’t it great? We showed her. She is so stupid, took her what, 21 years to fucking figure it out? And she thinks she’s so smart.

I was looking for food because I am always hungry. The food insecurity goes back to infancy. Maybe to the womb: my mother says she was not to gain weight and spent the entire pregnancy longing for a gigantic ice cream Sunday. Think of being in a womb, attacked by antibodies to tuberculosis, and starving all the time. Might be a little bit worried when birth happens. Fuck, I am going through a tunnel, what horrors await me here? But maybe there will be more food.

Maybe someone will love me. Maybe there will be someone for me to love. And feed. We can give each other food.

My advice to you is don’t be the ball. I was the ball for 21 years. I was so hungry the whole time, for food and for love, that I kind of noticed but dismissed it as unimportant. Food and love were more important. Work and my patients were more important. You don’t matter and your games are trivial.

It will be the weakest one who will be the ball. You worry that you are the one. You should worry. You had better look strong right away. Post some horror. Write something really tough. Don’t show anyone any niggling doubts. Um, the ball is wearing oxygen. I am feeling a little bad about this. Are you feeling bad about this? The ball isn’t just crazy, it’s hurt. Actually crazy is an illness too: I know that you discriminate and think that cancer is a legitimate illness and that mania isn’t, but you are assholes. No, you’re too small and pathetic to be an asshole. You are a one celled animal that is clinging to a hair on an asshole and you get shat on daily. And you know, deep deep in your tiny shrunken heart, that you deserve it.

I am so glad I am not you.

I am tethered to oxygen. But I am healing. I don’t think you can. You are locked in your small sick pathetic triangulation competition and pretending that it’s a game that it’s ok that you are just playing.

Ick.

Meanwhile, the oxygen is portable.

I have food and I have love and I have work to do that lifts me on wings. I will go too near the sun and light on fire and fall burning, but that’s ok. I’ve done it before. The ocean heals me, always. It is so much fun to fly!

This is in memory of my mother, my father and my sister. I miss all three and I love them and they love me. Today is the day my mother died. The longer we live, the more days are days when someone that we love died. But they are still here. They are in the rocks and the sky and the trees and the coffee cup. They are not in sugary donuts or foods that cause heart attacks. But they are all around us, cradle us, still love us. Joy to you and the memories of your loved ones who have gone on. Blessings.

Qia and the liars

Qia is in her first year of college, 1200 miles from home. She joins the ski team, hoping to ski. There really aren’t mountains in Wisconsin. They are hills. She doesn’t have a car so she has to get rides to the ski hill. She does get demo skis, because she is on the team. It’s mostly guys, a few women. The guys chug a beer at the top of each run. The runs are ice after the first time down. It is very poorly lit and very cold. Qia is afraid of the ice and the guys and the drinking.

At Christmas she goes home, to Virginia. She really wants ski pants, she tells her mother. She is cold. She is still skiing in spite of the drinking and the scary guys and the ice. They yell at her to go faster but she goes the speed where she will not die. It doesn’t matter anyhow. She goes to a formal race and they have three foot tall trophies for the boys and nothing, not even a ribbon, for the women.

At home, her father is laughing. He is giggling, silly. He doesn’t make any sense. He gives Qia the creeps. Her mother sails along like nothing is wrong. Qia’s little sister has gone from the extroverted life of the party to locked down so hard that her eyes are stones. Fungk, thinks Qia.

Her father loses his down jacket, leaving it somewhere. Then he borrows her mothers and loses it too. Qia’s sister has out grown hers. On Christmas morning there are two down jackets and a pair of ski pants.

The ski pants are two sizes too small. Her father laughs. The down jackets are the ugliest colors, cheaply made, junk. Qia watches her mother and sister try to smile.

Qia leaves the ski pants and returns to Wisconsin. She gets a spider bite. It spreads. She goes to the doctor. He gives a laugh of relief and says it is shingles. He has to explain what shingles is. “It either means you are very run down or have severe stress.” Qia laughs. Worst Christmas of her life so far.

She realizes the problem. Her father has been abducted by fairies and a changeling put in his place. She reads everything she can find about changelings. Adult changelings are rare but not unknown. She pulls out every stop on top of her heavy schedule to learn about how to fight fairies. She can’t afford to hire a fighter. She finds an iron sword at a second hand shop. She hangs around the gyms and watches the fairy fighters fight. She goes home and practices every move. She collects herbs.

She sets things up before spring break. She arrives home and asks her mother and sister to go with her to a specialist in changelings and fighting fairies. Qia is sad but confident. Her mother and sister both cry after watching the movie about the behavior of changelings. Qia asks her mother and sister to help her.

They both refuse.

Qia can’t understand it. But she has studied and read the books. She will do it alone.

She meets with her father. She tells him how awful and frightening Christmas was. She tells him how ashamed and scared she was. She reads him a letter that her sister wrote to her, emotionless, about having to watch him when he is curled in a fetal ball at the top of the stairs. Her mother asked her sister to watch him, so he wouldn’t hurt himself. Her sister says that she wanted to go out with her friends. Her sister is in tenth grade.

Her father doesn’t say a word.

Qia begs him to tell her the key. The word that will open the portal. She shows him the sword and lists all of her herbs and describes her training. She tells him that after she defeats the fairies he will go home and her real father will be returned. She says that she knows he isn’t happy here, with mortals.

He doesn’t say a word to her for the rest of spring break. Her mother and sister do not say a word about it either. Her father drinks more heavily. Qia returns to college.

Qia refuses to come home for the summer. She stays in Wisconsin. She does not want to be around any of them.

Her sister is three years younger. Qia wishes that she could scoop her up and take her to Wisconsin. Qia frets and is in pain. Qia’s second year starts and her sister is in eleventh grade.

Qia’s mother calls. Qia’s sister is on her way. 3000 miles away. “At the last minute, C invited her to live with them in Seattle.” says Qia’s mother. “C was leaving the next day. Your sister decided and went with her. It’s a relief because your sister was getting A’s on tests but refusing to turn in homework, so overall she was getting D’s. ” Qia is relieved. C and S have a son named after her father. He is younger than her sister. Qia also has a cousin 6 years older who lived with C and S and still lives in Seattle. Qia wishes her little sister the best.

Years later, after her mother has died, Qia asks her father about it. By now her father is back and the changeling is gone. I was angry, says her father. But your sister was getting into lots of trouble. Really bad trouble. What could I do, locked in fairyland. He does not go into what Qia’s sister was doing.

And after her father dies, Qia finds a letter. The letter is from C to her mother. It is talking about her sister going to live with C and S. My mother lied to me, thinks Qia. I am not surprised. I wonder why she lied to me. Qia thinks it is probably because her mother set it up with C and did not tell her sister. Qia thinks that her mother lied to her sister. Qia thinks how much that would have hurt her sister: that her mother chose the changeling over her. Her sister would have been terribly hurt and angry.

But so many are dead, what does it matter? Qia’s mother is dead. Her father is dead. Her sister is dead. C’s son is longest dead. S is dead. Even the changeling is dead. Friends in fairyland let Qia know. Actually, Qia and C are the only ones left living.

C did not lie to Qia or her sister directly. She let Qia’s mother do the lying.

Qia does not talk to C again.

Qia is tired of liars.

______________________________________________________________________________________________________________________________

This is not a story about fairies. It is about alcohol or any addiction. We must support families, because the whole family becomes ill. Triangulation, lies, competition, enabling. In my maternal family, the enablers die before the enablees. I have chosen to leave the system and I refuse to be either an enabler or enablee. If you are in that sort of system, you may find that the family resists you leaving and tries to draw you back in to it. When you do finally succeed in leaving, there will be a strong reaction. When the pirahnas run out of food, they eat each other. Stand back and don’t get drawn back in. The newest victim will need to make their own decision to stay or leave.

chronic fatigue

I am realizing that I have had chronic fatigue since 2014. Or possibly 2012.

We know that chronic fatigue can be kicked off by infection. One in ten people with a severe infection is diagnosed with chronic fatigue. Severe stress can also kick it into gear or a combination of stress or grief or attack or assault and infection can kick it in to gear.

We don’t really understand it, though I am finding experience to be a very great teacher.

As far back as medical school and residency, I was curious about it. I love the edges of things: it is the things that we don’t understand that I study. I pick up bits of information like a crow or magpie. I add it to the pile of things related to it in my brain. Sometimes I will add just one more small piece and the entire pile of puzzle pieces with suddenly, in just a blink, rearrange itself into a picture.

The pieces won’t arrange themselves until I have a complete picture. Or, well, until something in my brain is satisfied that it is complete enough. Since nothing is every complete or completely understood, is it? Nothing fixed and we make up all the words.

Anyhow, chronic fatigue would explain why running my own clinic, I did not see more than ten patients a day. Also I do have some OCD, hidden under a messy packrat gene. You would NOT look at my house two months ago and think that I have some OCD. Messy and chaotic. But I am a precision demon about patient charts and I am always thorough. In 2009 our local hospital let me know that my reputation was of a brilliant diagnostician. Ironically, this was right before they fired me for arguing about the patient quota of 18 per day. I ran late because I could not stop being thorough. I cut my work from 4 days a week to 3.5 but that was still two hours of dictating and paperwork for every day of clinic. So clinic was 28 hours plus the dictating and paperwork and calling specialists and calling insurance and a one hour meeting at lunch with the administration EVERY DAY FOR MONTHS, so really clinic was 8 hours of patient contact plus the one hour lunch meeting. Redo the math: 28 hours plus 4 one hour lunch meetings plus 7 hours of the generated deal with stuff AND do not forget about call nights. 39 hours plus call. At least one call night a week, 6 pm to 8 am, so that is 51 hours or more. I felt that I was working flat out as fast as I could every single day in clinic and I still was not keeping up.

I also really really resented the one hour lunch meetings because I was only allowed 20 minutes for a patient and was to see them “for one thing”. Seeing people “for one thing” is unethical and dangerous because for example: a diabetic with a toe infection. That is already two things. But you’d better calculate the third: kidney function, because you have to dose the antibiotic for the toe based on the kidney function, and diabetes is the number one cause of adult kidney failure in the US. Oh, and you’d better check on the diabetes too, because if their blood sugar is whomping out of control, the toe won’t heal and that’s how they got infected in the first place. So I might have ranted a bit about seeing people “for one thing” because I think it is an UNETHICAL DANGEROUS LOAD OF CRAP. DO NOT PUT UP WITH IT, DOCTORS AND PATIENTS OF THE UNITED STATES. It is corporate trying to maximize profit and they can frankly go to hell and stay there. Single payer. ‘Nuf said.

Even more ironically is that two years after they fired me for vocally disagreeing with the quota (I would add that I was not diplomatic and I was vociferous), the hospital dropped the quota down. To what I had asked for, 16 patients a day. I actually had kept track through my career and knew that I averaged 16 patients a day. One partner usually saw 20 or 21, but the problem was that he kept the chart in his head. When I would get one of his patients, I’d have to say, “Um, you have some heart disease, right? You’ve had a heart attack or a bypass? What year was the bypass? How many vessels?” I’d be guessing from the medicines and clues… but the past history was not entered into the chart. So, yeah, I only saw 16 patients a day but my charts were solid and thorough and the charts on his patients were a lot more comprehensible every time I saw one of his patients and did the chart for him. He owes me. Pay up.

Anyhow, I have worked really hard for the last seven years, in spite of some chronic fatigue and fibromyalgia. Which I rather refused to admit to myself. I thought I was “well”. I felt bad that I didn’t clean up my chaotic house.

Now I forgive myself for the house. Because the truth is I couldn’t clean up the house. Not after 7-10 patients and running my own clinic, CEO, chief cook and bottle washer, dealing with the covid changes, trying to figure out medicare’s arcane language, fielding malpractice insurance, business insurance, insurance insurance and phone company scam calls.

I have been sick at home for 6 weeks. I have been on oxygen for 4 days? 5 days? I would have felt a lot better and been able to think better if I had been on oxygen the whole time. Meanwhile, turns out I CAN clean up and organize in spite of being hypoxic. My house is now a very different place and the garden has changed enormously very quickly.

I am sending more money to India, via https://www.pratham.org/ . I can hardly bear to think about the people who cannot get oxygen. It feels terrible and terrifying to not be able to breathe. My chest hurt and lungs and heart when I even sat up, much less walked. If I walked slowly enough, it was bearable, just barely. I walked anyhow. Those edges, I am always there.

It is very weird being on oxygen. I have told people in the past when I had pneumonia. I’ve almost died from it four times. Heart rate of 135 holding oxygen level, but it doesn’t feel good. I am confident that I do not have coronary artery disease, because if I did, I would have had a heart attack the first week. A heart rate of 135 is running a marathon. It is exhausting. Right now on oxygen, my heart rate is 86 and oxygen at 98%. My normal heart rate is more like low 70s. Normal is 60-100, you knew that, right?

It is very weird being on oxygen. Because now I have a visible signal that I have been/am sick. Somehow this is making people more kind, more concerned. I keep thinking, but I told you I was ill before. Why does being on oxygen make people kinder?

I think that is the difference between having an illness where there is not much comprehension and one that we think we understand. So chronic fatigue and fibromyalgia are dismissed, disrespected and discriminated against, while cancer and sepsis and covid-19 and massive trauma in the military are supported. People send gifts.

In the past, tuberculosis was thought to be an illness of sensitive poets. Then the tuberculosis bacillius was discovered and it morphed into a disease of the poor dirty overcrowded low scum of humanity. My mother had tuberculosis, but luckily it was when we’d moved on to sanitoriums, because it is airborne, so stop the spread and take care of people. There was also medicine. My mother had to take 36 pills a day. At one point in the hospital, someone brought her a medicine.

“What is it?” asked my mother.

“Don’t worry about it.” said the nurse.

“No,” said my mother. “I want to know what it is.”

The nurse got the doctor. He came in and said, “Take the pill.”

“What is it?” said my mother. She was 22, 8 months pregnant, very poor, and a student at the University of Tennessee.

“Don’t worry about it.” said the doctor.

My mother threw it at his head. Because not only was she 22, 8 months pregnant, very poor and a student at the University of Tennessee, but she was also the daughter of F. Temple Burling MD, a psychiatrist, physician and professor at Cornell University.

And he had told her, don’t take anything unless you know what it is…..


________________________________________________________________

The picture is of my mother, Helen Burling Ottaway, in 1945. Helen Temple Burling II at the time of the picture.

________________________________________________________________

I think the final straw that made the hospital fire me was me singing “The 18 Patient Blues” which I’d made up, to the tune of 16 Tons, into the Chief Financial Officer’s voicemail and at the open mike at the Upstage, here in town. I admit, it was not diplomatic.

stealthie in the grass

Stealthie in my yard, two days ago. I like the current crop of grass and weeds.

Music: Simon Lynge Hallelujah: https://www.youtube.com/watch?v=iIHpeaHJJ9s

His website is here: https://simonlyngemusic.com/. Hey Simon, when do we get another local concert? Concert in the grass? Hugs, ya’ll.