Category Archives: angel

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Words

Always, perfect, us, and forever
A part of me stands back wondering why
I want to believe but cannot almost ever
He tells these formidable obvious lies
Like my sister you build a story
You are the star and say you never lie
I blink in wonder at your false silly glory
You build a castle of lies while I wonder why
I’d like to believe we’ll always be friends
A part of me wants security, foolish hope
I give it 50/50, unsurprised when it ends
I think you should wash your mouth out with soap
The best liars adore and believe their own words
And it takes years for the real truth to be heard

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For the Ragtag Daily Prompt: words.

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Refusing to yearn

Today I refuse categorically to yearn
I miss stupid things: that you rise early too
still this morning it’s annoying to learn
no one to talk to at the hour of stupid, no you
Impatient with my feelings, I wish you ill
hope you wake and want to whine and moan
hope you wake early and feel over the hill
but have to be quiet and grouse all alone
hope your mind buzzes like a hive of grumpy bees
while you spy on the internet and feel superior
hope you gather more facts piled like logged trees
and wonder why the piles don’t make you merrier
I hope you slowly open and become aware
you think you know everything and nobody cares

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Sol Duc is playing a game alone, capturing her back foot with her front, claws out on both. When she realizes I am watching, she puts her head down and pretends to be asleep. She isn’t asleep, I can tell by the claws and the ear tilt.

For the Ragtag Daily Prompt: yearn.

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Qia and the monsters

Qia is three. She is scared.

“Don’t be scared or go to your room.”

Qia wants help. She is scared of the monster, FEAR, the giant monster, but her father won’t listen. She sniffles and tries, but she can’t stop crying. She goes to her room, because her father has turned his back. Her mother is drawing. They are busy. They don’t like it when she is scared.

FEAR is enormous and pushes into the room with her. She cries harder in her room with the door closed. No one can hear her now except FEAR. FEAR is large and has horrible drippy teeth and too many arms and keeps swatting at her. Qia gives up and lets FEAR swat her. She sits on the bed with her knees up and puts her head on her arms.

FEAR rages around her room.

After a while Qia is tired of crying. She lifts her head off her arms.

FEAR is smaller. Still bigger than her father, bigger than her mother, but just standing and looking at her. FEAR looks tired too.

Qia pats the bed beside her. FEAR hesitates and looks scared. Qia waits. FEAR shuffles over and sits beside her on the bed.

The room is very quiet. Qia finds a scrap of tissue and blows her nose. She looks sideways at FEAR.

FEAR’s head is down and FEAR seems to be crying. Qia reaches out and takes FEAR’s paw. One of the paws. There are a lot.

FEAR holds her hand tightly and then leans against her. Qia wiggles over a bit more to give FEAR room. FEAR sighs and then snuggles down onto the bed, massive drippy toothy head in Qia’s lap.

Qia strokes FEAR’s fur. It is very soft and dark purple.

FEAR is the first monster that Qia makes friends with. There are many more.

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I was thinking about this story even before the Ragtag Daily Prompt: bugbear.

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The forum gathers

The forum gathers.

Red Paw puts her elbows on the table and her chin in her hands. “Told you so. Been telling you for 11 years.”

The small child/angel is sitting in a chair that morphs from regular boardroom chair to youth chair as she morphs back and forth.

“Nice job with the chair.” says Red Paw.

The two split and now there is a Small Child and an angel, sitting in two chairs.

Red Paw morphs too, into a bright red angel with a black halo and black bat wings.

The White angel nods and a feather drops. The feathers are bright white. Her halo is made of gold glittery pipe cleaners and attached at the shoulders.

Red Paw’s halo floats and seems to pull at the room.

The Quiet Woman sits in the fourth chair, with a cup of tea. “Anyone else?” she asks.

The others shake their heads.

“We are discussing the diaspora. Is it time to let them go?”

“Has been for 11 years.” says Red Paw nastily.

The small child nods.

The White angel says, “They want to believe what they want to believe. Let them go.”

“T, B, S, C, S, D, A, F, N, C, T, L, K, R and then next generation as well?”

All three nod.

The small child says, “They can contact us at any time.”

“They won’t.” says Red Paw.

“People can change,” says the White angel.

“And do they always?” says Red Paw.

“No.” says the White angel.

“I agree,” says the Quiet Woman. “We are done.” She brings a gavel down on the table, which rings like a singing bowl. The other three blur and melt in to her.

“We are done.”

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The photograph was taken 2016 or earlier when Halloween was on a Sunday. I dressed up and so did the minister.

For the Ragtag Daily Prompt: forum.

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Negotiating peace

I spend a long day wrestling with love
arguing with myself back and forth
I am no angel descended from above
Those undeserving of my love make me wroth
yet my core argues that it still loves them
and agrees their cruelty’s beyond the pale
I snarl and cough and choke on bitter phlegm
Defend my self staying far away and hale
My core agrees I shall not tolerate abuse
Forgive yet we despair we’ll ever reconcile
They show no guilt nor shame for their misuse
My core says let them be: she is so mild
Negotiation done: Agreed. I may love those who I love
But I leave contact with them to the angels and Beloved.

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Sonnet 10

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Tubulin and antibodies

This is very science dense because I wrote it for a group of physicians. I keep thinking that physicians are scientists and full of insatiable curiosity but my own experience with to date 25 specialists since 2012 would say that many are not curious at all. This continues to surprise and sadden me.

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All science starts with theories. Mothers of children with PANS/PANDAS reactions had to fight to get the medical community to believe that their children had changed after an infection and that symptoms of Obsessive Compulsive disorder and all the other symptoms were new and unexpected and severe. This is a discussion of tubulin and how antibodies work, theorizing based on my own adult experience of PANS. I was diagnosed by a psychiatrist in 2012. No specialist since has agreed yet no specialist has come up with an “overaching diagnosis” to explain recurrent pneumonia with multiple other confusing symptoms.

The current guidelines for treating PANS/PANDAS are here: https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148. This section discusses four antibodies that are a common thread in PANS/PANDAS patients. Antibodies to dopamine 1 receptors, dopamine 2 receptors, tubulin and lysoganglioside.

Per wikipedia “Tubulin in molecular biology can refer either to the tubulin protein superfamily of globular proteins, or one of the member proteins of that superfamily.” Tubulin is essential in cell division and also makes up the proteins that allow movement of cilia, flagella and muscles in the human body. There are six members of the tubulin superfamily, so there are multiple kinds.

Antibodies are complicated. Each person makes different antibodies, and the antibodies can attach to a different part of a protein. For example, there is more than one vaccine for the Covid-19 virus, attaching to different parts of the virus and alerting the body to the presence of an infection. Viruses are too small to see yet have multiple surface sites that can be targets for a vaccine. When a cell or a virus is coated with antibodies, other immune cells get the signal to attack and kill cells. At times the body makes antibodies that attach to healthy cells, and this can cause autoimmune disease.

Antibodies also can act like a key. They can block a receptor or “turn it on”. Blockade is called an antagonist when a pharmaceutical blocks a receptor and “turning it on” is called an agonist. As an example of how an agonist and antagonist work, take the pharmaceutical buprenorphine. Buprenorphine is a dual agonist/antagonist drug. In low doses it works as an agonist at opioid receptors. At high doses it is an antagonist and blocks the receptors. It also has strong receptor affinity. This means that it will replace almost all other opioids at the receptor: oxycodone, hydrocodone, morphine, heroin. The blockage and ceiling dose make it an excellent choice for opioid overuse. Higher doses do not give a high nor cause overdose and when a person is on buprenorphine, other opioids do not displace the buprenorphine and give no effect.

Similarly, a tubulin antibody could be an agonist or an antagonist or both. As an agonist, it would block function. My version of PANS comes with a weird version of chronic fatigue. When I am affected, my fast twitch muscles do not work right and I instantly get short of breath and tachycardic. I suspect that my lung cilia are also affected, because that would explain the recurrent pneumonias. My slow twitch muscles are fine. With this fourth round of pneumonia I needed oxygen for over a year, but with oxygen my slow twitch muscles do fine. We have fast twitch fatiguable muscles, fast twitch non-fatiguable, and slow twitch. With six families of tubulin and multiple subfamilies and every person making different antibodies, it is no wonder that each person’s symptoms are highly variable.

Currently the testing for the four antibodies is experimental. It is not used for diagnosis. When I had pneumonia in 2012 and 2014, the antibodies had not yet been described. There is now a laboratory in New York State that will test for them but insurance will not cover the test, it costs $1000 as of last year, and it is not definitive nor useful yet anyhow.

There are studies going on of antibodies in ME-CFS, fibromyalgia, chronic lyme disease, PANS/PANDAS and Long Covid. Recently antibodies from humans with fibromyalgia were injected into mice. The antibodies caused fibromyalgia symptoms in the mice: https://www.sciencedaily.com/releases/2021/07/210701120703.htm. One of the barriers to diagnosis and treatment of fibromyalgia is that science has not found a marker in common that we can test for. Even the two inflammatory markers that we use (C-reactive protein and Erythrocyte Sedimentaion rate) are negative in fibromyalgia. This doesn’t mean that people do not have pain or that it is not real, it just means we have not found the markers. It may be that the markers are diverse antibodies and there is not a single marker.

The research is fascinating and gives me hope. It boggles the mind, doesn’t it?

For the Ragtag Daily Prompt boggle.

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Heart meditation for the Solstice

It snowed last night. Covid is making me fall asleep at 4 or 5 pm which means I am very awake at midnight. The cats and I checked out the snow at 1 am.

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Avalokitesvara Bodhisattva is the Bodhisattva of Compassion. He is enlightened, yet chooses to return to earth over and over, until everyone is enlightened.

In China, he changes gender and names into Kwan Yin, the Bodhisattva of Compassion.

In college I date a lapsed Jewish Zen Buddhist and I learn to meditate. At the group meetings there are 6 or 7 of us. The Heart Sutra is recited and we meditate facing the wall, sitting on our zafus, for 40 minutes. It is easier to meditate in a group, though I have no idea why. Pride? Some connection to other’s breathing? The breathing will serve me very very well later, when I keep getting pneumonia. The ability to slow my breathing will help me survive.

When we had a group meditation, the Heart Sutra was read slowly and clearly. It has it’s own rhythm. I had lost it and finally found the translation we used. Here it is:

There is more than one translation, here: https://dharmanet.org/HeartSutra.html. I have tapes and books by Jon Kabat Zinn, who has studied mindful meditation for 30 years. He gets better results in his mindful meditation pain classes than opioids, with an average decrease in pain of 50%. His tapes have the same slow gentle speech as our Heart Sutra readers. It is hypnotic and I can relax. Though my oppositional defiance kicks in when he says firmly that I am to fall more awake, not asleep. I listened to that CD every night for a year after my father died. When he would tell me to fall awake, I would smile and slide into sleep, a happy rebel. I was comforted that I did not have to do what he said.

Where is the Avalokitesvara, the Kwan Yin of the West? What examples in the largest religions are there? Someone who stays even after they have achieved enlightenment/heaven because they want everyone there. Not only that, but they believe everyone can be there. And they will not give up until everyone is there.

I was surprised when a Unitarian Minister stated that Unitarians do not believe in Hell, because a loving creator would not consign anyone to Hell. I didn’t really want to give Hell up, but I also agree that a loving creator would not consign anyone to hell. It’s a bit easier for me to think of people as continuing on a wheel of life until they achieve enlightenment than to think of some people going to Heaven, but after all, I don’t know the whole story. No one knows another person’s whole story. I wrote DMV to figure out the Hell/Heaven thing. And the lead character wants to go back, because her work is not done yet.

I am thankful for paxlovid at the moment. I am thankful that I found this translation of the Heart Sutra.

Happy Solstice.

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The first photograph is Elwha looking very meditative after going out in the snow. Here they both are in the snow:

For the Ragtag Daily Prompt: solstice.