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.

Mask refusal in the 1918-1919 influenza pandemic

This is from an article about the history of medicine, about people refusing to wear masks in the 1918-1919 influenza pandemic:

“Adherence is based on three concepts: individualism versus collectivism; trust versus fear; and willingness to obey social distance rules. Jay Van Bavel opines that some countries tend to be more individualistic,16 and therefore more likely to reject rules and ignore attempts by public health authorities to “nudge” behavior change with risk messages or appeals for altruism. In collectivist cultures, people are more likely to do what is deemed best for society. Trust and fear are also significant influences on human behavior.17 In countries with political division, people are less likely to trust advice from one side or the other and are more likely to form pro- and anti- camps. This may also undermine advice issued by public health professionals. The last and most difficult to attain is social distancing. Human beings are social animals with bodies and brains designed and wired for connection. A pandemic, in many ways, goes against our instinct to connect. Behavioral psychologist Michael Sanders argues that if everybody breaks the rules a little bit, the results are not dissimilar to many people not following the rules at all.18

From another article:

“It was the worst pandemic in modern history.

The 1918 influenza virus swept the globe, killing at least 50 million people worldwide.

In the US, the disease devastated cities, forcing law enforcement to ban public meetings, shut down schools, churches, and theaters, and even stop funerals.

In total, 675,000 Americans died from the Spanish flu, named after the disease’s early presence in Spain.”

I read a book on the 1918-1919 influenza. It started in the U.S. The photograph that haunts me is the bodies stacked five deep in the hallways of San Francisco Hospitals.

And in a third article:

“The scenes in Philadelphia appeared to be straight out of the plague-infested Middle Ages. Throughout the day and night, horse-drawn wagons kept a constant parade through the streets of Philadelphia as priests joined the police in collecting corpses draped in sackcloths and blood-stained sheets that were left on porches and sidewalks. The bodies were piled on top of each other in the wagons with limbs protruding from underneath the sheets. The parents of one small boy who succumbed to the flu begged the authorities to allow him the dignity of being buried in a wooden box that had been used to ship macaroni instead of wrapping him a sheet and having him taken away in a patrol wagon.”

A CDC article about the history of the 1918-1919 influenza says this:

“The fully reconstructed 1918 virus was striking in terms of its ability to quickly replicate, i.e., make copies of itself and spread infection in the lungs of infected mice. For example, four days after infection, the amount of 1918 virus found in the lung tissue of infected mice was 39,000 times higher than that produced by one of the comparison recombinant flu viruses.14

Furthermore, the 1918 virus was highly lethal in the mice. Some mice died within three days of infection with the 1918 virus, and the mice lost up to 13% of their body weight within two days of infection with the 1918 virus. The 1918 virus was at least 100 times more lethal than one of the other recombinant viruses tested.14 Experiments indicated that 1918 virus’ HA gene played a large role in its severity. When the HA gene of the 1918 virus was swapped with that of a contemporary human seasonal influenza A (H1N1) flu virus known as “A/Texas/36/91” or Tx/91 for short, and combined with the remaining seven genes of the 1918 virus, the resulting recombinant virus notably did not kill infected mice and did not result in significant weight loss.14

The 1918-1919 influenza virus was sequenced and studied in 2005. We did not have the tools before that. Frozen bodies were exhumed with the permission of Inuit tribes to find the virus.

Later, that same article talks about future pandemics:

“When considering the potential for a modern era high severity pandemic, it is important; however, to reflect on the considerable medical, scientific and societal advancements that have occurred since 1918, while recognizing that there are a number of ways that global preparations for the next pandemic still warrant improvement.”

Let us now travel back to a worse epidemic: the plague in the Middle Ages:

“Did you know? Between 1347 and 1350, a mysterious disease known as the “Black Death” (the bubonic plague) killed some 20 million people in Europe—30 percent of the continent’s population. It was especially deadly in cities, where it was impossible to prevent the transmission of the disease from one person to another.”

I am hoping that people will awaken, get their vaccines, wear their masks and stop Covid-19 in its’ tracks, so that our death rate resembles the 1918-1919 Influenza. Not the Middle Ages plague.

Top ten causes of death: US 2020

Top ten causes of death US 2020, according to JAMA, here.

Total deaths: 3,358.814
Contrast total deaths in 2019, at 2,854,838. That number had been on a very slow rise since 2015 (2,712,630) to 2019 (2,854,838). That increase over four years is 142,208 people. Then the death rate suddenly jumps 503,976 people in one year. Ouch. I cannot say that I understand vaccine refusal.

1. Coronary artery disease: 690,882
Heart disease still wins. And it went up 4.8%. It is suspected that people were afraid to go to doctors and hospitals. I saw one man early on in the pandemic for “constipation”. He had acute appendicitis. I sent him to the ER and his appendix was removed that day. He thanked me for seeing him in person. Might have missed that one over zoom.

2. Cancer deaths: 598,932
This is cancer deaths, not all of the cancers.

3. Covid-19: 345,342
I have had various people complain that covid-19 is listed as the cause of death when the person has a lot of other problems: heart disease, cancer, heart failure. The death certificate allows for more than one cause but we are supposed to list the final straw first. I cannot list old age, for example. I have to list: renal failure (kidneys stopped working) due to anorexia (stopped eating) due to dementia. That patient was 104 and had had dementia for years. But dementia is not listed as the final cause. So if the person is 92, in a nursing home for dementia and congestive heart failure, gets covid-19 and dies, covid-19 is listed first, and then the others.

4. Unintentional injuries: 192,176
Accidents went up, not down, which is interesting since lots of people were not in their cars. However, remember that the top of the list for unintentional injuries is overdose death, more by legal than illicit drugs. If there is no note, it’s considered unintentional. Well, unless there is a really high blood level of opioids and benzos and alcohol. Then it becomes intentional. They do not always check, especially if the person is elderly. The number rose 11.1%, which seems like a lot of people.

5. Stroke: 159,050
This rose too.

6. Chronic lower respiratory diseases: 151,637
This went down a little. This is mostly COPD and emphysema. So why would it go down? Well, I think bad lung disease people were dying of covid-19, right?

7. Alzheimer’s: 133,182
This seems to belie me putting renal failure due to anorexia due to Alzheimer’s. I think they actually read the forms and would put that as Alzheimer’s rather than renal failure, because it is not chronic renal disease.

8. Diabetes: 101,106
This rose too. 15.4%, again, probably partly because people avoided going to clinic visits. Also perhaps some stress eating. Carbohydrate comfort.

9. Influenza and pneumonia: 53,495
So this went up too in spite of a lot less influenza. Other pneumonias, presumably.

10. Kidney disease: 52,260
This went up.

And what fell out of the top ten, to be replaced by covid-19?

11. Suicide: 44,834
This actually went down a little. What will it do in 2021?

So what will 2021 look like? I don’t know. It depends what the variants of covid-19 do, depends on what sort of influenza year we have, depends on whether we are open or closed, depends if we bloody well help the rest of the world get vaccinated so that there is not a huge continuing wave of variants.

Today the Johns Hopkins covid-19 map says that deaths in the US stand at 608,818 from covid-19. If we subtract the 2020 covid-19 deaths, we stand at 263,495 deaths from covid-19 so far this year. Will we have more deaths in the US from covid-19 than in 2020? It is looking like yes, unless more people get immunized fast.

Take care.

Free fall

I feel safest with the fallen

Everyone falls
No one is good

I am afraid
Of the people who
pretend to be good

the fallen
don’t pretend

We fell down down down
like an eternity
like it would never end

We were bad
depressed drunk addicted
liars cowards thieves

We held our arms out
There was nothing to stop us
Free fall

All we could do
was pray

We prayed
As best we could
With all our hearts
If we had no words

Falling angels
Caught us

Helped us
Claw our way back

Some people fall
Are still falling
Fall forever

Are they crazy
Or do they choose
To stay with the angels?

The people who say
They are good

We look at them

We know they haven’t fallen

They are lying to us
They are lying to themselves
They are lying to the Beloved
They want to be good
They want what they say to be true

But it isn’t

I meet the eyes of another fallen
Knowledge

I can see the memory
Of infinite free fall
In their eyes.

Yard Art

There is a fabulous garden in Portland, Oregon decorated with bowling balls.

i have decided to decorate with oxygen tanks.

if anyone has any oxygen paraphernalia, I want it, please.

This art installation is titled “Tethered”. Or possibly “Chained.”

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.

more grief and loss

Well, that’s the way it is.

The picture is from Lake Matinenda in Ontario.

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.

alternative medicine

Ok, I got this picture off Facebutt. I CONFESS. But I really want a doctor kit like this: so I can practice alternative medicine. I am disabled from Family Practice and I have to apply for disability payments (miles of paperwork) and I hear that even as a contractee I can apply for unemployment (miles more paperwork) and I see my hospital bill on line for the ER visit where I had chest pain and shortness of breath and the ER doc didn’t even give me an aspirin, so I want to know why I should pay them $900 and I am going to apply for reduced payments because last year I made 42 K, less then the nurses at Jefferson Healthcare (EVEN MORE PAPERWORK FOR THE REDUCED PAYMENTS) and really, it all sounds rather exhausting and I’d rather let the paranoia rise and hide under the bed. Where the OCD and ADHD will make me arrange the dust bunnies and dust elephants by size.

So this looks like a great doctor kit. If the patient sees me and doesn’t do a darn thing that I say, I shoot them with the gun in the forehead. If they do a little but not really very much, I set up the bowling pins and shoot them with the gun while I talk about how irritating it is to have patients use MY TAX DOLLARS though MEDICARE MEDICAID ACTIVE MILITARY DUTY AND THE VETERANS ADMINISTRATION NOT TO MENTION SOCIAL SECURITY DISABILITY to get advice and not follow it.

If they are merely disrespectful and tell me what Dr. Google says, I say “Duck.” and throw one at them. If they say, “I don’t take any farmasuiticals.” and bring a bag with the 12 supplement and vitamin pills they take daily, I give them the plastic pills to replace all their stupid supplements. “Here, take this. If it doesn’t work, I have suppositories, but they are four times this size so some people complain that they are uncomfortable.”

I am not sure WHAT the thing in the lower right corner is. A hair dryer? A fentenyl lollipop? Part of an old fashioned telephone?

Anyhow, someone find me one of these kits and send it to me. Pretty please. I am not allowed to do Family Medicine any more and really want to get started on Alternative Medicine.

tubing

The oxygen tubing follows me everywhere.

I have a large concentrator for inside the house. There is long green tubing that I plug into the pale tubing that goes to my nose.

When I go upstairs, it’s a bit complicated. I have to unplug the pale tubing and plug the upstairs long green tubing into the downstairs long green tubing and the other end into the pale tubing. Then untangle it and I can walk around upstairs and still breathe.

To go outside, I have small cannisters. Unplug from the big concentrator, plug into the small cannister, turn the concentrator off, turn the small cannister on. Get purse and whatever the heck else I am carrying. Try to remember if the small tank is close to empty. I am carrying an extra small tank in the car. I have to turn the tank off to change the respirator, then bleed the remaining pressure, then take the respirator off. Yesterday I put the respirator on upside down. The tank hissed at me like a terrifying snake. I have warning signs in my front and back windows now: do not smoke, oxygen in use.

I took care of a man in the hospital overnight once who HAD smoked on oxygen. The ER doc called me to admit him. “He lit his oxygen on fire with a cigarrette.” “And how bad is he?” “We need to monitor his lungs.” “IF HE HAS LUNG BURNS SHIP HIM TO SEATTLE, HELLO!!!” “Well,” says the ER doc, “Ok, he’s probably fine, just burned his nose. But I am not quite comfortable sending him home.” “Oh, well, then, geez. Okay, whatever.” Wimpy ER doc. I didn’t mind once he was honest. The patient admitted that he did not want to do THAT again and yes, his nose felt pretty burned.

No smoking at my house. I am not tempted to smoke ANYTHING. When I was twelve, I smoked pretzels with my cousins and sister. They do not stay lit well but we laughed a lot. It was really fun.

I don’t have enough green tubing for the basement. So there are monsters and I don’t go there any more. No, I can use one of the portable cannisters to start a load of laundry. I am supposed to only use the portable cannisters when I leave the house. Used one yesterday to go in the front yard and garden. Stomped the spade in, levered up the grass. Wait and breathe. Wait. Ok, stomp the spade in the next place. Wait and breathe. Wait.

I get more oxygen on Wednesdays. Tomorrow. If I BEHAVE then after a month, I will get a small concentrator that I can walk around with. Then I won’t have the bloody tubing tail. I am seriously looking forward to that. I still will have the tail some of the time because the concentrator will have charging and a battery life and AUGH MY OXYGEN RAN OUT WATCH OUT WORLD I AM HYPOXIC AND DANGEROUS!

I trip over the tubing and it gets tangled and I get caught on things and it yanks at my head. My dance skills and balance are way better right now ON oxygen than OFF it. I am not nearly as neurologically whacked out when I have the oxygen. Makes me wonder… I don’t feel nearly as much OCD/ADHD/oppositional defiant. Well, ok, the oppositional defiance is rather baseline for me.

Makes me impatient, but then, whatever. I will still get stuff done. You are only as disabled as you decide to be and this will barely slow me down. Hope I get off oxygen eventually, but that is not clear. With repeat infections your lungs can scar. Hope not. Time will tell.

And donate to something to get oxygen to India. I can hardly bear to look at the news about it. I felt so awful with just mild hypoxic, that went undiagnosed for 5 weeks. Dying of suffocation is not fun. Donate.