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.
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.
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.
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
I have just spent a week in San Antonio, Texas at the AAFP FMX: American Academy of Family Physicians Family Medicine Experience.
Whew. Long acronym.
However, I attended two programs on PTSD. One was a three hour offsite one put on by the U. of Texas Health Sciences Department of Family Medicine. The other was a one hour program about active duty military and PTSD.
The biggest message for me is HOPE. Hope for treatment, hope for diagnosis, hope for destigmatization, hope for remission. I am not sure if we should call it a “cure”. Once a diabetic, always a diabetic, even if you lose 100 pounds.
In medical school 1989-1993 I learned that PTSD existed but that was about it. There was no discussion of medicines, treatment, diagnosis or cure.
Ditto residency. I learned much more about psychiatry reading about addiction and alcoholism and Claudia Black’s books then I did in residency.
Fast forward to 2010, when I opened my own clinic. I worked as a temp doc at Madigan Army Hospital for three months.
The military was aggressively pursuing treatment and diagnosis of depression, anxiety, PTSD and traumatic brain injury. I worked in the walk in clinic from 6:30 to 8:00 four days a week. Every walk in had to fill out a screen for depression. They were trying to stem the suicides, the damage, the return to civilian life problems and addiction too. They were embedding a behavioral health specialist in every section of the military. I was amazed at how hard the military was working on behavioral health.
In 2010 I took the buprenorphine course, which is really a crash course in addiction medicine, at the University of Washington Med School. I took it because it was free (I had just opened a clinic) and I thought we were as a nation prescribing WAY too many damned opioids. Yes! I found my tribe!
This gave me a second DEA number, to prescribe buprenorphine for opiate overuse, but also hooked me up with the University of Washington Telemedicine. I presented about 30 opiate overuse problem patients (anonymously, there is a form) to the team via telemedicine over the next year. The team includes a pain specialist, addiction specialist, psychiatrist and physiatrist. They do a 30 minute teaching session and then discuss 1-2 cases. They often do not agree with each other. They reach consensus and fax recommendations to me. The Friday addiction one was shut down and now I present to the Wednesday chronic pain one.
But, you say, PTSD? Well, chronic pain patients and opiate overuse patients have a very high rate of comorbid psychiatric diagnoses. It’s often hard to sort out. Are they self medicating because they have been traumatized or were they addicted first and then are depressed/traumatized and anxious? And what do you treat first?
There was an ADHD program at this conference that said we should deal with the ADHD first. One of the PTSD courses said deal with the PTSD first. The thing is, you really have to address BOTH AT ONCE.
Tools? PHQ-9, GAD-7, PCLC and there is an ADHD one too. These are short screening tools. I don’t diagnose with them. I use them to help guide therapy along with the invaluable urine drug screen. Love your patients but verify. That is, the chronic pain patient and the addiction patient tell me the same thing: but one is lying. I don’t take it personally because they are lying to themselves. Also, studies have shown that many patients lie, about their hypertension medicine or whatever. If they have to choose between food and medicine…. I think food may come first.
The San Antonio program has a behavioral health person embedded in their clinic (like a diamond) and if a PTSD screen is positive, the doctor or provider can walk them over and introduce them and get them set up. This is more likely to get the person to follow up, because there is still stigma and confusion for ALL mental health diagnoses and people often won’t call the counselor or psychologist or god forbid, psychiatrist.
They have a protocol for a short term four week treatment. Four weeks? You can’t treat PTSD in four weeks! Well, sometimes you can. But if you are making no progress, the person is referred on if they will go. I have the handouts. I do not have an embedded behavioral health person. I wish I did. I am thinking of setting a trap for one or luring them in to my clinic somehow, or asking if the AAFP would have one as a door prize next year, but…. meanwhile, I may do a trial of DIY. No! you say, you are not a shrink! Well, half of family medicine is actually sneaky behavioral health and I have the advantage of being set up to have more time with patients. Time being key. Also I have seven years of work with the telemedicine and access to that psychiatrist. Invaluable.
So what is the most common cause of civilian PTSD? Motor vehicle accidents. I didn’t know that. I would have said assault/rape. But no, it’s MVAs. Assault and rape are up there though, with a much higher PTSD rate if it is someone the victim knows or thought loved them. Rates in the US general population is currently listed at 1%, but at 12% of patients in primary care clinics. What? One in ten? Yes, because they show up with all sorts of chronic physical symptoms.
Re the military, it’s about the same. BUT noncombatant is 5%. High intensity combat has a PTSD risk of 25%, which is huge. One in four. Not a happy thing. In 2004 less then half the military personnel who needed care received it. PTSD needs to be destigmatized, prevented, treated compassionately and cured.
The risk of suicidality: 20% of PTSD people per year attempt. One in five.
Men tend to have more aggressiveness, women more depression.
Back to that PCLC. A score of over 33 is positive, over 55 is severe. There is sub threshold PTSD and it does carry a suicide risk as well. In treatment, a score drop of 10 is great, 5-10 is good and under 5, augment the treatment. Remember, the PCLC is a screening tool, not a diagnosis. I often ask people to fill out the PCLC, the GAD7 and the PHQ9 to see which is highest, to help guide me with medicines or therapy. If I need a formal diagnostic label, off to psychiatry or one of my PhD psychologists or neuropsych testing. Meanwhile, I am happy to use an adjustment disorder label if I need a label. If the patient is a veteran and says he or she has PTSD, ok, will use that.
Untreated PTSD, the rate of remission is one third at a year, the average remission is 64 months.
Treated PTSD, the rate of remission is one half at a year, and the average duration is 36 months. So treatment is not perfect by any means.
Pharmacology: FDA approved medicines include paroxetine and fluoxetine, and both venlafaxine and one other SSRI help.
Benzodiazepines make it worse! Do not use them! They work at the same receptor as alcohol, remember? So alcohol makes it worse too. There is no evidence for marijuana, but marijuana increases anxiety disorders: so no, we think it’s a bad idea. Those evil sleep medicines, for “short term use” (2 weeks and 6 weeks), ambien and sonata, they are related to benzos so I would extrapolate to them, don’t use them, bad.
Prazosin helps with sleep for some people. It lowers blood pressure and helps with enlarged prostates, so the sleep thing is off label and don’t stop it suddenly or the person could get rebound hypertension (risk for stroke and heart attack). I have a Vietnam veteran who says he has not slept so well since before Vietnam.
Part of the treatment for the PTSD folks at the U. of Texas Medical Center is again, destigmatization, normalization, education, awareness and treatment tools.
Hooray for hope for PTSD and for more tools to work with to help people!
I hear people say, “Why is this person so reactive?” “They are suspicious.” “They just aren’t nice. Why can’t they be nice?”
When I get a new patient in clinic who is not friendly and looks suspicious at my questions and is not warm, I do not react. I assume that this person has been hurt and has a past that has a lot of dark in it.
Recently I was talking to a person about chronic pain. We were nearly out of time and I was describing Adverse Childhood Experience scores.
“I have the highest possible score,” he said.
I said, “I believe you.” and waited. He had my attention.
He did not want to tell me about it and he knew we were out of time. “I ran away to live on the streets when I was six.” he said flatly.
I said, “Yes, if things were that bad, I think you would have the highest possible score.”
That was the end of that visit. I gave him the link to the CDC website about ACE scores and studies and set up a follow up.
But think about that. He ran away at age six and lived on the streets. Not with a sibling or a parent or an adult. He was by himself.
He told me a little more on the second visit. I knew he could read. I pictured street classes under bridges. “How did you learn to read?” I asked.
“The authorities kept picking me up. I would run away from foster care as soon as they placed me. Usually the same day. When I was fifteen, a judge said “If you get your GED, I will emancipate you.” It took me a year and three months, but I got my GED.”
So is this your image of a street person? All losers? All crazy? This is a man who left because the street was safer than home and got a GED living on the streets.
He said, “My life has all been like that.”
I said, “Chronic pain is not exactly surprising then, is it?”
There is a song by The Devil Makes Three with this line: “I grew up fast and I grew up mean, there’s a thousand things inside my head I wish I ain’t seen. Now I just wander through a real bad dream, feeling like I’m coming apart at the seams.” That song speaks to me and speaks about the people who view the world with suspicion and fear and whose porcupine defensive spines are quickly raised if they feel threatened. I do well with them because I am the same way and I mostly don’t react to them. I don’t tell them to calm down. I don’t get scared or angry. I stay present and wait. And sometimes they will tell me what happened to them.
How can any of us blame an adult for their fearful terrible childhood? Instead we need to give them space and not reject them out of hand. All that does is reinforce the damage. I think that people can heal, but we must make room for them and behave ourselves and not react.
The photo is my daughter at the Wooden Boat Festival in 2009.