Practicing Conflict II

Practicing conflict II

In Practicing conflict, I wrote about practicing conflict by arguing different sides of a topic inside my head. I wrote that I don’t fear conflict and have learned to enjoy arguing with myself. I am a physician and physicians argue all the time.

What? No they don’t. Well, the doctor persona does not argue with the patient much. Some doctors give orders to patients, others try to negotiate, some try to convince. But behind the scenes, doctors are more like the Whacky Racer Car with the Cave Guys, running with their feet and hitting each other with clubs.

In residency in Family Practice at OHSU in Portland, Oregon, I start on General Surgery during internship. This is in the early 1990s and there was not much in the way of “disruptive physician” rules. I have to cover Trauma and Plastic Surgery and General Surgery at night on call. The resident is present but I get paged first for patients on the floor. I learn that I should go to all Trauma pages in the emergency room. If I know what is happening with the new Trauma patient, it’s a lot easier to handle the phone calls for more drugs and so forth. Also, the resident is less mean to me.

We attend the Trauma “Grand Rounds”. These are unreassuring to a new intern. A resident presents a trauma patient, giving the history in the accepted formal order. The Faculty Trauma Surgeons interrupt, disagree with management of the patient and yell. They yell at the resident and at each other. The upper level residents yell too, being well trained. The Trauma Surgeons do not agree with each other. They are inflammatory and rude. I am shocked initially: medicine is not a cookbook, is not simple and it appears that it is a controversial mess. It turns out that medicine IS a controversial mess.

There is not as much yelling on the next rotation. At that time Trauma Surgeons yelled more than any other set of doctors that I ran across. They yelled in the ER, at each other, at the staff, at the nurses, at the residents. The culture has changed, I suspect, but that’s how it was then.

I take Advanced Trauma Life Support as a third year resident. The Trauma Surgeons at OHSU helped write the course. They don’t agree with it. On some questions the teaching Surgeon says, “The answer to this question is (c), “ followed by muttering loudly, “though I totally don’t agree with that and I would do (b).” Another Trauma resident or surgeon then might start arguing with him, but they moved on pretty quickly, to teach the current agreed best practices in the book. Which change every few years. Great.

Years later (2009) I join the Mad as Hell Doctors, to go across the US talking about single payer. They are a group from Oregon. Physicians for a National Healthcare Program are a bit cautious with us the first year: we might be whackos. We have an RV with our logo and we have a small fleet of cars and what do you think we do in the cars? We argue. Or discuss. Or whatever you want to call it. We spend the driving dissecting issues and how to present things best and tearing apart the last presentation and rebuilding our ideas. The group does 36 presentations in 24 days. Each presentation takes an hour to set up, two hours to do and another hour to break down and debrief. We get more and more exhausted and cranky and um, well, argumentative, as the trip proceeds. Even though I think of the Whacky Racer Cave Guys running with their feet and bonking each other with clubs, this is the most wonderful group of doctors I have ever been with. A common goal that we all want to get to, discussing and disagreeing on strategy all the way! I feel closer to those physicians in a week then I feel to any of the physicians that I’ve worked with for the last 9 years in my small town. Conflict with a common goal.

Doctors are TRAINED to argue, even with themselves, to document every decision in the chart with reasons why they have reached that decision. And that they have thought about all of the reasons for say, a low potassium, thought of every possible cause and worked their way through testing. The testing always has two strands. One strand is rule out the things that could kill the person NOW, even if rare. The other strand is what is common? You have to think about both at the same time, always. And argue with yourself about which tests should be done, in what order, what is most important, how do you treat the person while awaiting results, and have I missed anything? And if we aren’t sure, we call another doctor, run it by them, wait for them to shoot holes in our logic or to say, no, I can’t think of anything else.

We can deal with conflict. We must deal with conflict. The world is too small not to deal with conflict, with disagreements, with different viewpoints and positions and ideas. If doctors can do it every single day at work, then everyone else can too. Trying to see all the positions and possible diagnoses saves lives in medicine. We need to extrapolate that to everything else. Try to see other positions, try to understand them, to respect them. We can and we must.

Blessings.

Here are the Whacky Racers:

And Madashell Doctors blog: http://madashelldoctors.com/category/uncategorized/page/3/

For the Ragtag Daily Prompt: discuss.

The photograph is from my clinic once we had stopped seeing patients and were selling everything. Mordechai was our clinic skeleton, made of plastic, from China. This was in January 2021.

Covid-19, Long Haul and the immune system

“Whether immune-mediated secondary OCD could also develop as a consequence of COVID-19 poses a highly relevant research question to be elucidated in the near future [35, 36]. The first studies of their kind have demonstrated infection-triggered neuronal antibody production against various antigens in COVID-19 patients who were presenting with unexplained neurological symptoms [37].” from https://www.nature.com/articles/s41398-021-01700-4

Um, yes. It is looking highly likely that chronic fatigue, fibromyalgia, and Long Haul Covid-19 are all immune system responses. They are not simple at all. They can involve antibodies, cytokines and killer T cells and probably other things.

Antibodies: the difficulty here is that we all make different antibodies. It’s all very well to say that people with PANDAS and PANS make antibodies to Dopamine 1 and 2 receptors, tubulin receptors and lysoganglioside receptors, but people each make different antibodies. The antibodies can attach and block the receptor or can attach to the receptor and turn the key: act like dopamine, for example. Dopamine makes people tachycardic, a fast heart rate. If dopamine receptors are blocked, that could be a source for “brain fog” and feeling down.

Cytokines: I worked at the National Institutes of Health back in the 1980s before medical school. We were studying interleukin 2 and tumor necrosis factor for cancer treatment. Building 10 had mice on the north south axis and human patients on the east west. It was fascinating. Now I am reading a current book on the immune system. There has been a lot of research since 1988. Cytokines are released by cells and are immunodulating agents. They are a form of communication in the immune system.

Killer T cells: When antibodies coat a cell, there are immune system cells that kill and/or eat the coated cells. This is good if it is an infectious bacteria or a cell infected with virus, but it is bad if it is your own joint cells or your heart cells or, horrors, brain cells. In rheumatic fever, antibodies to strep A attack the patient’s own cells as well as the strep A cells. This is called “pseudo autoimmune” but I am starting to suspect that all the autoimmune disorders are responses to stress or infection or both.

So if you are still reading, you are saying wait, this is awful, what can we do about it?

Our understanding of the immune system is better than 1988 however… it still has a ways to go. I think that Covid-19 and Long Haul Covid are going to seriously accelerate the research in this area. Meanwhile there are some things people can do to “down regulate” or quiet down the immune system.

If antibodies are causing some of the problem, we need to quiet them down. With severe PANDAS in children, plasmapheresis filters the blood and filters out antibodies. However, the body keeps making them. Infection must be treated first, but then the initial antibody response lasts for 6-8 weeks. Then the body makes memory antibodies and cells to remember. With reinfection, the response lasts for 2-4 months and then subsides if the infection is gone.

Treat infection first. Then treat urgent symptoms, including urgent psychiatric symptoms. Then work can start on the sympathetic nervous system, quieting down to the parasympathetic state. This is not easy with Long Haul Covid-19 or chronic fatigue or fibromyalgia because people are afraid, confused, in pain, exhausted. I have written about the sympathetic and parasympathetic nervous systems here and here. Start with slow breathing, four seconds in and four seconds out. It takes practice.

I have been getting feedback at the pulmonary rehab. When I arrive, they take my pulse, 02 saturation and blood pressure. They put the pulse oximeter on and often I am up in the 90s. I slow my breathing and watch my pulse drop. One day I came in relaxed and my initial pulse was 71. When I was a little late, it started at 99 and came down. The therapist took it off when I got my pulse down to 90. We can check our own pulse, the number of heart beats in one minute, or a small pulse oximeter is about $30.

We can’t really “fix” the immune system with drugs. Steroids can quiet inflammation but they make us more susceptible to infection and raise blood sugar and cause multiple problems when used chronically, like osteoporosis. Plasmapheresis is expensive and requires specially trained nurses. Doesn’t a breathing exercise sound a lot more DIY and cheaper too? You got this. Practice, practice, practice.

sorrow

Most of the time I am fine (I miss you I miss you I miss you).
I am busy during the day (You said I needed my own life).
What shut you down, I wonder (the family event).
You said I always try to learn daily (you say you refuse to change).
I have friends that love me and my kids (you say you do not love me).
I don’t think I know what love is (your actions felt like love sometimes).
Mostly I don’t think about you (sometimes it is very dark).
I hope that you are well (I wish I wanted you to be happy without me).
I am patching my heart again (for you I use elk sinew).
The deer remind me (life goes on, even when one doesn’t want it to).

A previous poem, when my sister died: The deer remind me.

Adverse Childhood Experiences 14: Hope

I keep reading bits about despair and about how a generation of children is being “ruined” by the pandemic.

Not so, I say. There is hope. We need to support each other to survive and then to thrive.

This generation WILL have a higher than average ACE score. If the Adverse Childhood Experience scale is from zero to eight, children in this time period will have at least one higher point than average and many will have three or four or more. Loss of a parent, a sibling, beloved grandparents during covid. Increases in domestic violence, child abuse and addiction. These are all part of the ACE score.

What does this do to children? They have survival brain wiring. They will do their best to survive what is happening. A friend and I both have high ACE scores, 5 or more, and we are both oppositional defiant. We showed this in different ways. He grew up in the same community. He escaped from home and knew all the neighbors. He walked to the local church and attended at age 3 or 4. He has lived in this community all his life.

His oppositional defiance showed up at home, where he consistently refused to obey. And in school, where he confounded and disobeyed teachers and passed anyhow.

My family moved every 1-5 years. I hated moving. I wouldn’t talk to kids in a new school for a year. It was very difficult. So my oppositional defiance was very very internal. I hid in books and in my head. In 6th grade I got in trouble for hiding novels inside the school book I’d already read. I also would just not listen and my respect for the teacher got even lower when she would be angry that I knew the answer to the question once she’d repeated it. I wasn’t listening because I was bored. She was the first teacher that I thought, well, she is not very bright. The next year they stuck me in the honors class and I stopped being bored, though I still questioned practically every opinion every teacher had. I wanted evidence and I did not believe it just because the teacher said it.

I am not saying that oppositional defiance is in every high ACE score. I don’t know that. Why oppositional defiance? Imagine you are a small child and you are beaten. There isn’t rhyme or reason. You can’t predict when the adult will be out of control. Why would you behave “well” if it makes no difference? You might as well do what you want, because nothing you do will change the adult. Or imagine you are a small child who is with one person, passed to another, then to another. You may not exactly trust adults after two or three repetitions. And you want to survive.

There is an increase in addictions, behavioral health diagnoses, and chronic illness in adults with a high ACE score. A researcher when I first heard a lecture about it said, “We think perhaps that addiction is a form of self medication.” I thought, oh, my gosh, how are we ever going to treat THIS? Well, we have to figure that out now, and we’ve had 30 years to work on it.

I was very comfortable with the oppositional defiant patients in clinic. I got very good at not arguing with them and not taking their behavior personally. They might show up all spiky and hostile and I might be a little spiky and gruff back: sometimes that was enough. I think the high ACE score people often recognize each other at some level, though not always a conscious one. With some people I might bring up ACE scores and ask about their childhood. Sometimes they wanted to discuss it. Sometimes they didn’t. Either was ok.

One thing we should NOT do is insist that everyone be “nice”. We had a temporary doctor who told us her story. Her family escaped Southeast Asia in a boat. They had run out of water and were going to die when they were found by pirates. The pirates gave them water. They made it to land and were in a refugee camp for eight years or so. She eventually made it to the US. She was deemed too “undiplomatic” for our rural hospital. I wondered if people would have said that if they knew her history and what she had been through. It’s not exactly a Leave it to Beaver childhood, is it? When she was telling us about nearly dying of thirst in the boat, my daughter left her chair and climbed on my lap. She was under ten and understood that this was a true and very frightening story.

We can support this generation of children. This has been and is still being Adverse Experiences for adults as well. Family deaths, job loss, failure of jobs to support people, inflation. Remember the 1920s, after World War I and the last pandemic, of influenza. “On October 28, 1919, Congress passed the National Prohibition Act, also known as the Volstead Act, which provided enabling legislation to implement the 18th Amendment.” (wikipedia). There were forces trying to legislate behavior, as there are now. The result in 1920s of making alcohol illegal was speakeasies, illegal alcohol, and violence. Some people acted wild after WWI and the influenza pandemic and some people tried to lock down control, by controlling other peoples’ behavior. It did not work then and it will not work now. The wildness is out of control grief, I think, grief dysfunctional and drinking and shooting and doing anything and everything, legal or not. We remember how the 1920s ended too. Let us not repeat that. Let us mourn and grieve and support each other and support each other’s decisions and autonomy.

Blessings.

behavioral health, cancer, and the immune system

There are more and more articles about immune causes of “behavioral health” diagnoses.

The latest I’ve read is about schizophrenia:

https://www.nature.com/articles/s41598-020-63776-0

Auto-antibodies are antibodies that we make against something else that then attack a part of ourselves. The most well know version of an auto-antibody is Rheumatic Fever, where an antibody to streptococcus A attacks the joints or skin or heart. I had a patient in Colorado who needed a new heart valve at age 10 or 11 because of Rheumatic Fever.

I have written a lot about PANDAS and PANS (respectively Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep A and Pediatric Acute Neuropsychiatric Syndrome) because an older psychiatrist was suspicious that I have PANS. I have had pneumonia four times and it is accompanied by anxiety and fear, part of which turns out to be hypoxia and tachycardia. I think a heart rate of 135 makes just about ANYONE feel anxious. It feels awful.

But what about other Behavioral Health Diagnoses? Remember, we are on the DSM V, the fifth manual of psychiatric diagnoses. We have not had markers or a clear cause. That is, we are aware that serotonin is low in the intracellular spaces in the brain with depression but we don’t know what the mechanism is, what the cause is and what exactly is happening in the neuron or brain cells. A paper on a particular rat neuron said that there were 300 different types of serotonin receptors on that neuron. Blocking one type caused rats to act in an obsessive compulsive manner. But there are 299 others and then combinations. Whew, there is a lot to be learned about the brain.

Fibromyalgia can be caused by autoantibodies, at least some of the cases: https://www.sciencedaily.com/releases/2021/07/210701120703.htm

Chronic fatigue: https://pubmed.ncbi.nlm.nih.gov/34441971/

Lupus and fibromyalgia overlap: https://pubmed.ncbi.nlm.nih.gov/9207710/

Autoimmune disorders are more common in women. We think this is because of pregnancy. The woman’s immune system has to tolerate a pregnancy where half the genetic material is from the father. Yet the immune system also has to recognize “not me, infection” and be able to distinguish that from the pregnancy. This is tricky. The most common autoimmune disorder currently is believed to be Hashimoto’s Thyroiditis, where there are self antibodies to the thyroid. Post covid could potentially beat this out.

Chronic fatigue and fibromyalgia have been orphan diseases in that we do not have an inflammation marker that defines them. The ESR (erythrocyte sedimentation rate) and CRP (um) are usually normal. These are often elevated in rheumatological disorders. Not having a marker doesn’t mean that the muscles are not painful and doesn’t mean that the fatigue is not real.

I am hopeful that we are on the cusp of a true revolution in medicine, with more understanding of the immune system and behavioral health disorders, as well as post covid, fibromyalgia and chronic fatigue. I worked at the National Cancer Institute in the 1980s before medical school, with Steve Rosenberg, MD. He was trying to get the immune system to fight cancer.

Now there has been a cancer treatment with 100% success: an immune treatment for people with rectal cancer with a particular immune profile. This is AMAZING! https://www.zmescience.com/science/experimental-trial-cancer-complete-remission-02725735/

Only 18 patients, but 100% success! No surgery.

The patch for the National Cancer Institute shows a man fighting a crab: Cancer, the crab. Dr. Rosenberg talked about Sysiphus, who was rolling a stone up a mountain eternally while it rolled back on him. From here: Later legend related that when Death came to fetch him, Sisyphus chained Death up so that no one died. Finally, Ares came to aid Death, and Sisyphus had to submit. In the meantime, Sisyphus had told his wife, Merope, not to perform the usual sacrifices and to leave his body unburied. Thus, when he reached the underworld, he was permitted to return to punish her for the omission. Once back at home, Sisyphus continued to live to a ripe old age before dying a second time.

Maybe the stone has reached a resting place. Blessings and peace you. Please peace me.

Covid-19: Hope for Long Haul

I want to offer hope to the people with Long Covid-19. Having been through four bad pneumonias, with increasingly long recovery times, and now disabled for doing Family Medicine, I have experience to share. First I want to talk about chronic fatigue and fibromyalgia.

I am a piler, not a filer. Including in my brain. I have been adding to the chronic fatigue and fibromyalgia pile since I was in medical school.

In residency a new patient questions me. “Do you believe in chronic fatigue?” he says, nearly hostile.

“Yes,” I reply, “but I don’t know what it is or what causes it or how to fix it.”

For years different causes were suggested. Often infections: EBV, mononucleosis, lyme disease. Some people didn’t have any infection. I did note even in residency that my chronic fatigue patients all had one thing in common: they were exhausting.

Does that sound terrible? They were all type A, high achievers, often super high energy. Often they got sick or crashed when they were working three jobs, or working 20 hours a day on their own business, or doing something that sounded insanely exhausting and unsustainable. And most of them wanted that back. “Ok, wait. You were working 20 hours a day, seven days a week, got sick and THAT is what you want to get back to?”

None of the chronic fatigue people seemed to be type B.

Eventually I read that one in ten people with ANY severe infection can get chronic fatigue.

Then I work with the U of Washington Telepain Clinic, on zoom. They start studying functional MRIs of the brains of people with fibromyalgia.

They use a thumbscrew. They put a measurable amount of pressure on a person with no fibromyalgia. The person reports 3-4 out of 10 pain. The brain lights up a certain amount in the pain centers on the MRI. The doctors can SEE it. Then they test the fibromyalgia people with the same amount of thumbscrew pressure. The fibromyalgia people report 8-9/10 pressure and they are not lying. The pain centers in the brain light up correspondingly more. So they ARE feeling 8-9/10 pain.

Is this a muscle problem? A brain problem? Or both?

It appears to be both. Chronic fatigue and fibromyalgia and other disorders with pain out of proportion to the physical findings were being called “central pain processing disorders”.

I thought of chronic fatigue as a sort of switch. As if at a certain level of stress or exhaustion or infection the body would throw a switch. And force the person to rest.

I wondered if the type B people just rested and got over it, while the type A people fought it like tigers. Which seemed to make it worse.

And now we have Covid-19. The study getting my attention is saying that 20%, or 1 in five people age 18-64, have Long Haul symptoms. Over 65 it is 25%, one in four. And it can happen in people with no preexisting conditions. Preexisting conditions or not, this sucks. The two biggest complaints are lung related and muscle related.

I have chronic fatigue following my third pneumonia in 2014. I might be just a little type A. I went back to work too soon (6 months after the pneumonia) and after a half day would crash asleep at 3 pm. For another 6 months. Now that I have had the fourth pneumonia and have been off for a year and been on oxygen, I feel better than I have since before 2014, even though I still need oxygen part time. Guess I was in denial about the chronic fatigue. NOT ME!

So, dear reader, learn from me and don’t be like me. The biggest thing that I have had to get through my thick type A skull is that when my body wants rest, I need to rest. This can be hella annoying, as my son would say. I have to pay attention to my energy level and decide what to do. And some of my precious energy has to go to things like laundry and paying bills! How very frustrating. My markers are energy level and also pulse. My pulse tells me when I need oxygen and when I am really sick. With the first pneumonia back in 2003, influenza, my resting pulse stayed at 100. My normal then was about 65. When I stood up, my pulse went to 135. It was EXHAUSTING to stand up. I had to rest half way up one flight of stairs. It was hard to walk two blocks to pick my daughter up from primary school. And I looked fine. Neither my doctor nor I could figure it out. I finally guessed that it was lung tissue swelling and hoped it would go down eventually. It did, but it was a full two months and my doctor partners thought I was malingering. I tried not to wish it on them. It sucked and I felt awful back at work, but my pulse had finally come down. We even did a heart ultrasound, but all it showed was a fast heart rate. My chest film looked “normal”, because the tissue swelling is throughout the lungs, so it cannot be seen on a chest xray. It was very weird, but I recovered. And all the descriptions of Long Covid sound like my lung swelling. Fast heart rate, difficulty breathing, muscle pain and terrible fatigue. Go back to the couch.

Go back to the couch and wait. Do what you have to but if your heart rate is over 100 when you get up, you have to rest. Otherwise you will prolong it. Seriously.

More later. Peace me and sending love and peace.

Anna’s hummingbirds can survive below freezing temperatures by slowing their metabolism at night, until it warms up in the morning. Talk about resting!

how to use a specialist

I am a rural Family Medicine doctor, board certified and board eligible. I have used the Telemedicine groups in the nearest big University Hospital since 2010.

Initially I started with the Addiction Telemedicine. I accidentally became the only physician in my county prescribing buprenorphine for opioid overuse in 2010. I panicked when I started getting calls. Dr. Merrill from UW had taught the course and gave me his pager number. I acquired 30 patients in three weeks, because the only other provider was suddenly unavailable. Dr. Merrill talked me through that 21 day trial by fire.

I think that I presented at least 20 patients to telemedicine the first year. The telemedicine took an hour and a half. First was a continuing medical education talk on some aspect of “overuse”, aka addiction, and then different doctors would present cases. We had to fill out a form and send it in. It had the gender and year of birth, but was not otherwise supposed to identify the person. TeleAddiction had a panel, consisting of Dr. Merrill (addiction), a psychiatrist, the moderator/pain doctor, and a physiatrist. Physiatrists are the doctor version of a physical therapist. They are the experts in trying to get people the best equipment and function after being blown up in the military or after a terrible car wreck or with multiple sclerosis. There would usually be a fifth guest specialist, often the presenter.

After a while, TeleAddiction got rolled into Telepain and changed days. They added other groups: one for psychiatry, one for HIV and one for hepatitis C. These can all overlap. I mostly attend TelePain and TelePsychiatry.

After a while, I pretty much know what the Telepain specialists are going to advise. So why would I present a patient at that point? Ah, good question. I use Telepain for the weight of authority. I would present a patient when the patient was refusing to follow my recommendations. I would present to Telepain, usually with a very good idea of what the recommendations would be. The team would each speak and fax me a hard copy. I would present this to the patient. Not one physician, and a rural primary care doctor, but five: I was backed up by four specialists. My patients still have a choice. They can negotiate and they always have the right to switch to another doctor. Some do, some don’t.

I am a specialist too. Family Practice is a specialty requiring a three year residency. The general practitioners used to go into practice after one year of internship. My residency was at OHSU in Portland, with rotations through multiple other specialties. We rotated through the high risk obstetrics group, alternating call with the obstetrics residents, which gave me excellent training for doing rural obstetrics and knowing when to call the high risk perinatologist. In my first job I was four hours by fixed wing from the nearest more comprehensive obstetrics, so we really had to think ahead. No helicopter, the distance was too far and over a 9000 foot pass, in all four directions. That was rather exciting as well.

what would YOU choose?

Here is a story of a choice about an abortion, a theraputic abortion, where a mother has to make a difficult choice. I have seen Family Medicine patients since 1991, so this will not identify a particular person. No HIPAA problem.

I see a new patient in clinic, a woman, who already has children. She has back pain. All is routine until she says, “Sometimes my leg goes numb from the knee down.” I stop. This is NOT normal. “Completely numb?” I say. “Not patchy?” “Yes.” “How often?” I ask. She shrugs. “Not very.” “If it happens again, call me and I want to see you right away.”

Why? This is unusual because most numbness follows dermatomes if it is from back pain. The dermatomes on the skin wrap from the back down the leg all the way to the toes. When someone describes numbness or the pain of shingles in that distribution, we know which nerve is affected. Numbness from the knee down can come from diabetes and other causes, but it is not on one side and it doesn’t come and go. So the unusual stands out for me.

“Anything else weird?”

“I had vision problems in my last pregnancy. They sent me to specialists, even a neuro opthamologist. He couldn’t find anything.”

“Ok.” I shrug. We move on.

She calls two days later. “Both legs are numb from the knee down.”

“Come in today,” I say.

Both legs ARE numb from the knee down. She also can’t lift her feet. The muscles from the knees down are weak. I get neurology on the phone. “MRI her from the top of her head to the base of her spine.” I call the hospital and set it up. That day.

She has seven brain lesions suspicious for multiple sclerosis. She did have an MRI in the previous pregnancy, which was negative. I do not remember how old the child was, 2-4 years or more when I saw mother.

I call her back in for results, we talk about specialists, and I call a neurologist in the nearest big city, three hours by car from where she lives. We start medications and my patient is scheduled.

She has multiple sclerosis. The flare improves. The visual symptoms were MS in the previous pregnancy, but it was not yet visible on brain MRI.

Then she gets pregnant again. Her symptoms immediately flare. She comes to me and I call the neurologist.

The symptoms are not a little worse. Much worse. “I suggest she terminate the pregnancy.”

My patient is horrified. Until the neurologist’s next words. “She needs to terminate if she wants to be able to walk for the children she has.”

My patient chooses an abortion, to terminate the pregnancy. Because she has a bad version of MS*, she remembers the symptoms in the last pregnancy, she is young, she is clearly progressing and she wants to take care of the children she already has.

What would YOU choose? For yourself, for your sister, for your wife. If you are male, do you have any right to make that choice? Now picture yourself pregnant with that choice. And thank you for reading this.

*Addendum: present evidence says that multiple sclerosis does NOT worsen with pregnancy. However, another illness, NMO (neuromyelitis optica) instead tends to become more active in pregnancy. It previously was lumped in with MS until the antibodies (anti-NMO) were identified and it was realized it’s a different subtype of demyelination disease, with its own treatment options. Medicine changes over time and the woman, the neurologist and I were working with the information available at that time.

abuse, enabler style

I am raised by a family of triangulating enablers and enablees.

The enablers are my mother and two uncles. They are very very smart. Let me qualify that: they are very very smart intellectually. Emotionally, not so much.

The two uncles have PhDs and are professors. They marry wives that are lessor in their view. One tells my mother that he wants a woman who is not as bright as he is. I don’t know if she is less bright, but she is a hella better athlete. I also have the impression that she had a time where she drank too much.

The other uncle marries a woman who tends to be a hypochondriac. He takes her to India, where she gets polio while pregnant. She is then a sick hypochondriac, which is very difficult. The ill can control their families by planning things and then getting sick at the last moment. On the other hand, chronic fatigue and fibromyalgia are very real and we are on the edge of figuring them out. That uncle divorces his wife and I instantly like both of them better. They stop being a weird unit and are suddenly individuals.

My mother tells me, when I am in college, “I wondered if your father was an alcoholic when I married him.” I want to hit her. She won’t leave him, she won’t stop enabling him, they scream at each other at 2 am often. Now I wonder about that and conclude that either screaming at someone was something she needed or she was an alchoholic too.

After my mother dies, I ask my uncle, what about his parents? After all, the three of them learned enabling somewhere and it pretty much has to be at home.

My uncle tells me his parents had a PERFECT marriage and that my grandmother LOVED being the wife of a physician and professor.

Um, so, then, why did she pay my tuition to medical school, uncle?

And I think about my mother’s stories. Once, she says, your Uncle Jim bet his friend Dick that Dick was too chicken to shoot a cigarette out of Jim’s mother’s mouth. Ooooo. With a rubber band shooter. Yes, my grandmother. Bob took the bet and succeeded. My grandmother roared with anger and the two boys ran like hell and hid.

And someone in the family tells me: your grandfather helped your grandmother control her temper.

There it is. The enabler/enablee.

The enablers die first. My grandfather of cancer at 79, my mother of cancer at 62. The cousins are all angry at me because I won’t follow the family rules and triangulate in a satisfactory manner, and I don’t care any more. I am ignoring them. I got my father’s banjo back and I am done. The two cousins I own land with jointly are not the worst triangulators.

I have to remind myself: for them, this is love. For some people, controlling or being controlled is what functions as love and intimacy. Fighting and tears when person A talks to person C about person B and person C then lets person B know, that is how they feel close. It is not only families, but communities. Clay Shirky’s description of a group being it’s own worst enemy describes the same patterns: identify an enemy inside or outside the group and then everyone comes together against the enemy. The enemy says the wrong thing, doesn’t worship the right god/desses, wears different clothes, looks different. And the group feels safer once the scapegoat has been killed, the guy has been burned. It would be nice if we could burn a ritual guy instead of torching each other.

The real anger is in the enabler. They control it by having the enablee express it. Then it is not “theirs”. They can feel superior to the enablee who is out of control. Sadly, the problem is only fixed temporarily and they will need their anger expressed again and again and again.

The cycle can be broken. It is a lot of work.

Blessings.

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