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.
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.
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.
…singing. Singing on oxygen is a challenge. Why? Well, because I am TRAINED. I am trained to breathe through my mouth, slowly filling my lungs, for the next phrase. I don’t breathe through my nose because that is noisier, might make a sound during a rest.
No, really. Singers and conductors think that way. PERFECTION is not achieved but we sure have fun trying.
So if I breathe through my mouth as trained and ingrained, and the oxygen is coming by nasal cannula….
….I am goofy and hypoxic by the end of the song. WHY do I feel like I might fall over, I think? WHAT the hell is the matter with me? OH. I HAS NOT BIN BREATHING THE GOOD OXYGEN STUFF. Facepalm. Nosebreathe.
But it’s pretty ingrained. I keep forgetting.
The good news is I feel WAAAAY better. My lungs don’t feel like someone stuck a burning torch in them any more. It hurt for six weeks, every time I sat up or stood up, the muscles of heart and lung HURT. I knew it was my heart but I also was pretty damn sure it was not coronary artery disease and it wasn’t congestive heart failure. That day I went to the ER, normal labs and echocardiogram even though it hurt like shit. I do wish the ER doctor had thought to walk me. He would have put me on oxygen then and I would have gotten better faster. And then I think of 2014 and 2012 and 2005. I didn’t think of it and neither did ANY of my doctors. I did USE oxygen in 2014. I had my father’s tanks because Evil Lincare had kept delivering them even when my father had a concentrator and so there were 16 or 18 full size oxygen tanks in his small house which is a huge fungking fire hazard, those asshats.
Now Lincare is delivering to me and under much improved management. I think the man who delivered it WAS management. He said yes, they had some shady and inappropriate behaviors in the past but he has been KICKING BUTT AND TAKING NAMES and they aren’t going to do that shit any more, not with him in charge. I liked him. Thank goodness Lincare is being run ethically.
I have pulmonary function testing today. I think that will be abnormal. However, I am enough better that I may no longer qualify for oxygen. In which case my insurance may try to refuse to pay for it. Oh, goody, a totally legitimate fight and they will be darn sorry if they try to refuse the oxygen. Mr. or Ms. State Insurance Comissioner! CEO of Insurance! Board of the Insurance Company! Poor sorry little rural family practice doctor, now disabled from her clinic for her fourth pneumonia and ya’ll refusing her oxygen when she has no income because her disability doesn’t kick in until she’s been sick for three months.
Heh. Bring it on. Got my tai kwan do, kinda rusty, my katana, a yard long rusty pipe wrench… bet I get coverage for the oxygen.
Meanwhile I either gotta stick the nasal cannula in my mouth when I am singing or bloody well breathe through my nose…..
I drop the fragment of rock with the seam a second time. Now I have three pieces. I stop there. When I climb back up the bank, I have an oxygen tank, a camera and rocks. It involves quite a bit of swearing and stopping to rest while I try to get enough oxygen.
Hopefully I will get better. I don’t know when or even if. My friend B says he wants to know what the pneumonia was, that triggered this round of pseudoautoimmune misery. I shrug. “We know some things it isn’t.” I say. “It isn’t covid-19, it isn’t influenza A or B, it isn’t respiratory syncytial virus, it probably is not strep A though I still haven’t had the second blood test. It isn’t pneumococcal pneumonia. It could have been mycoplasma pneumonia or pertussis or a very long list of viruses. Doctors are practical scientists, at least, I am. If the patient is getting better, don’t chase an answer that won’t add anything. I caught something, probably in the clinics where people kept taking off their masks when they were ‘alone’ in the room. They didn’t realize that they were breathing out viruses or bacteria that could take me out.” We aren’t exactly sure if the combined penicillin and clindamycin, high dose, helped or not. I think it did, but stress makes this worse too and it was a very very stressful time. Mean people, you know, and mean family. I just don’t understand what they are thinking.
I really think that post covid-19, we should wear a mask if we go out in public when we are sick. Because you don’t know which people are the vulnerable ones. I normally have lots of energy and I don’t think people would guess that I have had chronic fatigue and that I am terribly vulnerable to infection. In the clinic I owned, after I was sick in 2014, I asked any patient who was sniffling or coughing to wear a mask. “I get pneumonia easily,” I would explain. They had the right to refuse and then I would not see them. After I closed my clinic and went to work as a temp doc, I could not protect myself. I asked the nurses to ask people to PLEASE keep their masks on, but people are people. They didn’t. I had a bit of a PTSD reaction every time I walked into a patient room and they had masks off. I wanted to run out of the room screaming but I was more restrained and just said, “Please, please, PLEASE put your mask back on, other people have been in the room.” I didn’t add “And you might kill me.” because I only had 20 minutes for the visit…..
The pieces of rock are beautiful, aren’t they?
Here is a great song. Got it from this blog: https://reflectionsofanuntidymind.blog/2021/05/07/icky/
This is all for the Ragtag Daily Prompt: workshop. I like working with rocks. I have to decide what work to do next, since it’s no longer safe for me to do family medicine. It SUCKS. I really miss my peeps.
I have to get well first. If I do, what next?
I am singing: “You are coming up ACES!”
Ok, but, hopefully not. Because I am talking about ACE scores, Adverse Childhood Experiences. See the CDC website, this is all based on a ginormous Kaiser study in the 1990s.
Yep. A very very interesting topic for a rural family practice physician.
For the Ragtag Daily Prompt: ACE.
today goes deep
I let it
when someone says “You are too emotional.”
it means “I am not comfortable with your emotions.”
it is them not me
I could care less
what they think
what they feel
whether they are comfortable with my emotions
they will be on my shit list
until they learn
I am comfortable with my emotions
today goes deep
I let all the darkness rise
and my small child
this day is yours
I am with you today
you I the Beloved
no shoulds today
nothing that you do not want to do
I will not clean
I will not pay bills
I will not sit with fools
who say I am too emotional
we can laugh
would you like to smash a plate?
says small child
music of the spheres
we go deep
I would pray if I could. It seems ludicrous to pray for a poet, but there it is.
It started with two soldiers. The Army was embedding a behavioral health specialists (the new politically correct term for mental health specialists) in units starting before 2010. Soldiers were trained in suicide prevention, instructed to stay with a buddy if they made any comments about suicide. A soldier was to walk his or her buddy directly to the behavioral health specialist or to to higher rank. As soldiers went on their fourth and fifth tours, post traumatic stress disorder, depression and traumatic brain injuries were rampant. Unfortunately, psychologists basically felt like they were putting Power Ranger band-aids on hemorrhaging brain arteries. It wasn’t working.
A soldier was accompanying a convoy in Iraq when an IED went off. Right through the bottom of a convoy truck. The driver died screaming from an arterial groin bleed. Two of the eight soldiers were killed. The truck was abandoned and the rest of the convoy got back to the safe (mostly) zone. That soldier had the glassed ghost look in her eyes and got quiet. The usual response was to avoid someone’s eyes and hope for the best, but another soldier wouldn’t let her alone. She kept asking, “Tell me. What happened?”
The first soldier finally snarled out part of the story.
The second soldier pinned a poem to her pillow, describing the event. Our first soldier came in screaming and threw the crumpled ball of paper at her chest. “That’s not what happened! That’s not how I felt! Not even close!”
“Well, what DID happen!” The rest of the unit tried to hide in plain sight or disappeared to the bathroom or got really interested in books or watching the same video over and over, but the two of them stood face to face and went at it. Words, not fists. The crumpled paper was retrieved, the poem rewritten. It took two weeks before soldier one suddenly said, “That’s it. That’s pretty good. For a poem.” But she was back, her gruff foul mouthed efficient self.
Of course it wouldn’t have gone anywhere if the behavioral health specialist hadn’t joked about it to his superiors. The Army was really desperate. In spite of all the work, the suicide rate was still challenging the combat death rate, and there just weren’t enough people to deploy.
The Army went looking for poets. Four were promptly deployed into units. Two of them turned out to be pretty useless, but the other two: the units thrived. Word started getting around. The poets were swamped with people from other units.
The recruiting campaign: “We want you, yes we do, poet show your heart so true!” was painful, but the Army did not care. And poets stepped forward from within the ranks! Don’t ask, don’t tell turned on it’s head. In spite of the medical community’s cries for waiting until more scientific studies were done, and the press and cartoonists drawing pictures recruiters welcoming wimpy pale asthenic writers with open arms, the Army embedded a poet in every unit, right beside the behavioral health specialist. Oh, of course they tried prose too. The academics had a field day fighting about why prose didn’t work. But it didn’t.
It’s the height of irony that we’re cut off with everything we need, except a poet. A water source, food, ammunition. We’re holding our position. Our back up poet is dead ten days ago, but our main poet got an IED blast. Traumatic brain injury, two weeks ago. We can’t get him out, of course. You would think someone would bleed if they were that bad, but he just can’t hold on to any memory. The soldiers tell him their stories, he struggles and tries, but he can barely hold on to one line. Can’t read, though he can write. Can’t see very well either.
The whole unit is starting to look glass-eyed and haunted. Smith asked to go in the jail yesterday and for the door to be closed. He promptly started screaming. It got quiet after a while so they went in. He was sitting on bunk. “Ok.” he said. “I might come back tomorrow.” Some soldiers are writing their own limericks or free verse. It’s ironic that it hurts morale so much, knowing there’s help available. Knowing the chances of a poet reaching us in time are very slim.
I will use this for the Ragtag Daily Prompt: comeback.
“Please write something from a medical perspective about anxious people who worry every little thing is some serious disease.” — reQuest 2018
This is quite a brilliant and timely question.
The DSM V was published on May 18, 2013. This is the Diagnostic and Statistical Manual of Mental Disorders version 5, and it redefines various disorders. For example, opiate dependence has disappeared and so has opiate addiction. Instead, there is one diagnosis: opiate overuse syndrome. Which really combines both opiate addiction and opiate dependence and makes it a spectrum.
The DSM V drops hypochondriasis. Wait, you say, that diagnosis no longer exists? Well, yes, correct. So the diagnoses are made up? Yes, as my daughter says, “All the words are made up.” So psychiatry changes and the diagnosis definitions change and some diagnoses disappear. Medicine is like the Oregon Dunes, really. The information is changing daily. I went into medicine thinking it is like a cookbook, where I just have to learn all the recipes. Nope, sand dunes: the wind and waves and new information change the contours daily. It drives my patients nuts. “My insurance won’t cover the medicine I’ve been on for 26 years.” Um, yeah, sorry, work for single payer and shut down the insurance companies, ok? “This combination of medicines has never killed me yet.” Um, yeah, sorry, but you are in fact getting older and we no longer think that combination is safe and first do no harm: I can’t prescribe combinations that I think may kill you.
Hypochondriasis has been replaced by two diagnoses: Somatic Symptom Disorder and Illness Anxiety Disorder.
“Patients with illness anxiety disorder may or may not have a medical condition but have heightened bodily sensations, are intensely anxious about the possibility of an undiagnosed illness, or devote excessive time and energy to health concerns, often obsessively researching them. Like people with somatic symptom disorder, they are not easily reassured. Illness anxiety disorder can cause considerable distress and life disruption, even at moderate levels.”
“To meet the criteria for somatic symptom disorder, patients must have one or more chronic somatic symptoms about which they are excessively concerned, preoccupied or fearful. These fears and behaviors cause significant distress and dysfunction, and although patients may make frequent use of health care services, they are rarely reassured and often feel their medical care has been inadequate.”
So, subtle difference. Broadly, the illness anxiety disorder people are sure they have SOMETHING and are worried about ALL THE SYMPTOMS. The somatic symptom disorder people are worried about A SPECIFIC SYMPTOM OR SYMPTOMS and WHY HAVEN’T YOU FIXED ME.
Some of the people complaining of weird symptoms do have a medical diagnosis that has not been sorted out. Take multiple sclerosis for example. The average time from the start of symptoms to diagnosis is 4-5 years.
Another one is sarcoidosis: https://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/syc-20350358. It’s hard to diagnose, can affect different parts of the body, and it’s still pretty mysterious. Add to that list chronic fatigue, fibromyalgia, chronic pain, and numerous other diagnoses.
With multiple sclerosis, you may be thinking, well, if they had just done the brain MRI sooner, the diagnosis would be made. Not necessarily. I did find a patient with a bunch of MS brain lesions: made the diagnosis. She had had a brain MRI 3-5 years before because of suspicious symptoms during pregnancy. At that time her MRI was entirely normal.
The DSM V does not have a diagnosis called psychophysiological disorder. This is an ongoing discussion:
This site: http://www.stressillness.com/ is my current favorite about psychophysiological disorders. I heard a lecture from the physician who runs the site. He is at OHSU in Portland and gets the gastrointestinal patients where “they can’t find anything wrong” from all over the state. He is really good at this. He and I are in agreement: the symptoms are real. However, the symptoms may come from emotional suffering and from emotional trauma in the past and present.
It is clear that fibromyalgia is a “real” disorder: functional MRI of the brain shows the pain centers lighting up more with a standardized pain stimulus than “normal” patients. PTSD is “real”. It is interesting that there is more stigma surrounding fibromyalgia and chronic fatigue than PTSD: is that because the former two are more often diagnosed in women, and the latter is legitimate (finally) for male (and a smaller number of female) veterans?
And what do I, your humble country doctor, think? I think that chronic fatigue and PTSD and fibromyalgia and illness anxiety disorder and the others all may be variations of the same thing. Our body will handle and “store” or “stuff” emotions that we cannot handle or are not in a safe situation to handle it. Eventually our body decides that we are now safe enough and will notify us that we have to handle the emotions. Currently our culture is terribly unsupportive of this and there is huge stigma attached to dealing with it. We are all supposed to just be nice.
In the end, we can’t judge how a friend feels or whether they are well or not. We have to treat them with respect and kindness.
The photograph is me on my grandfather’s lap. He became a psychiatrist and I am a family physician. Taken in 1962 or 3. We are at cabins in Ontario, Canada. What a pair of grubs, but happy…..
And she was unsympathetic
That immigrant doctor
I heard she told a patient
“You’re too fat.”
This was whispered
In accents of pleased shocked horror
She came to dinner
That unsympathetic doctor
Told a little of her story
To my wide eyed children
When she was 10
They were boat people
Pirates caught them
“They weren’t so bad,” she said
“We were about to die from lack
of food and water
Though we heard other stories
that were very bad.”
My daughter could imagine the boat.
She moved to my lap.
The pirates were too real.
Perhaps plenty is not always taken
And sympathy is a matter of degree.
previously posted on everything2.com in 2009 and here too, though I have not figured out how to find it….
for the Daily Prompt: enlighten.
Luminous night of the soul: https://www.youtube.com/watch?v=0OaRZrdoTQ0