A Diagnosis at Last – Dysautonomia

INCHING TOWARD CHRISTMAS

I imagine a lot of you are feeling anxious about the approach of Christmas. Now is the time to start planning how you can minimize the amount of stress, both from the pressure of internal issues and from the craziness (or loneliness) created by the here-and-now world. It’s reassuring to have a plan going into a holiday and not have to scramble at the last minute to think of things to protect and calm yourself.

What has helped in the past? What has been useful in other situations, and could it be adapted to the days around Christmas? If you write down your plan, you will have a place to jot down things as they occur to you. You might be surprised at the number of things you have thought up and at how creative some of them are. 

Remember that the winter solstice is on Wednesday, December 21, and Christmas Eve/Christmas Day is on Saturday, December 24/Sunday, December 25. That doesn’t give you much time to catch your breath between the two major holidays.

 

SPENCER’S NEWS

This cat is a little odd, even for a cat. He knows how to simultaneously do and not do something. That’s called passive-aggressive in humans and weird in cats. 

Here’s what’s been going on lately.

I was hoping that by the end of the year he might reset his circadian rhythm and start hanging out with me in the office. To prepare for him, I bought a large, sumptuous, but inexpensive cat tree so he could watch me from up high, where he is safe from being stepped on. I moved furniture to accommodate the cat tree and started working on the boxes of stuff on the floor. 

Spencer beat the deadline by a month! For the last four days, he has spent the day in my office, only an arm’s length from me. How sweet! Except he remains invisible. Perhaps he has body dysmorphia and can’t bear people looking at him, except when he is totally immersed in inhaling catnip or eating.

You see, between my chair and the window is my former kitchen table. Underneath the table are boxes. Spencer lurks right behind the box that is nearest to me. Now and then he stirs in his sleep and the tiny sound alerts me to his whereabouts. I moved the box a little to give him more room and to allow me to peek and see if he was there.

See what I mean by passive-aggressive? “You want me by your side? Fine, but you won’t know I am there. I get the last word.” Actually, it seems more like social phobia, doesn’t it?

 

GRASSROOTS’ NEWS

There are new free Yoga and art workshops. We are finally starting to work on updating the resource section. (No promises that it will be done by the new year.)

If you want a copy of the latest Newsletter, or you want to subscribe, sign up in the comments section or use the GrassRoots “contact us” form at https://grassroots-ra-mc-collective.org/contact-us/

 

A DIAGNOSIS AT LAST – DYSAUTONOMIA

For those of you who are new to my blog, or have resumed reading after a hiatus, welcome! I’ll start by giving you a little background.

For about 30 years, I have had labile high blood pressure. In the last year, I have experienced sudden large drops in BP (between 50 and 60 points.) My current cardiologist was cautious about treating the high readings for fear of precipitating a low and risking me passing out and falling. He referred me to a hypertension clinic for a consult. Recently, I started having days when my blood pressure was normal +/- 15 points.

The hypertensive clinic ruled out lots of possible causes and then ran out of steam. I found one more possible cause of low readings by Googling and was able to document it. The breakthrough, however, was thanks to a survivor friend who suffers from polyvagal shutdown. She suggested I check it out, as one of the symptoms is a large drop in blood pressure. 

(An aside – RA survivors are treasure-troves of information, no thanks to their horrendous childhoods.  Many of us read voraciously in search of answers about our abuse and its effects, and many others have amassed a wealth of information about one of the many illnesses that are directly or indirectly caused by growing up with constant trauma.)

Polyvagal shutdown is a term for the trauma reaction of the autonomic nervous system. When fighting or fleeing isn’t possible, a person or animal goes into freeze mode. Think of a possum, tricking a predator into thinking it is dead and not as safe to eat or as tasty as living prey. I figure if it happens when no danger is present, it’s a kind of body memory, a flashback. I Googled it, found a self-screening test, and discovered that my symptoms matched….the controls. Rule that out.

But the possibility of some neurological issue causing the extreme lability made me ask for a neurology consult. The after-visit summary of my first visit gave me the idea I might have Parkinson’s Disease. I followed up on that and have been accepted as a patient in a neurological practice that focuses on Parkinson’s. They are in the process of ruling out other diseases, as Parkinson’s has no unique measurable quality that differentiates it from diseases with similar symptoms. They have also given me a physical therapy appointment to work on balance, as I trip over my own feet and fall a lot.

On Thursday, I had the second part of the evaluation to see whether the blood pressure issues were caused by a faulty autonomic nervous system. Well, golly gee, guess what? I flunked all four of the tests. That indicates that my brain is no longer able to communicate with my body to keep my blood pressure within a normal range. Finally, finally, we have the answer.

Preparing for the tests was very unpleasant. I had to stop using pain meds for three days before the test. I am soooo grateful for CBD and gabapentin! Without them, it was a miserable three days. I worried about experiencing pain during the tests and also about the possibility of having flashbacks, as I would be strapped down for two hours.

Yes, there was pain, but no more than I had before the tests began. And zero flashbacks! What a pleasant surprise. The techs were nice, and they talked a lot. I could ask a question when I felt myself drifting away and restart a conversation, so I felt very much in control.

I like the matter-of-fact way that I disclose these days. So simple: 1. the possibility of flashbacks, 2. because of a shitty childhood, and 3. talk to me – your voice keeps me anchored in the present.

Okay, so what I know at this moment, before reading the after-visit summary, is that my autonomic nervous system can no longer control my blood pressure and cannot tell me to sweat in response to heat. I now like the winter temperature to be ten degrees warmer than I did two years ago, so I guess my ability to adapt to temperature is faulty. There are other symptoms I have that may or may not be caused by dysautonomia.

I know something else. Like much of the psychological and physical damage done by ritual abuse, dysautonomia cannot be fixed and cannot be healed. But there are things I can do to manage the symptoms and make them less bothersome. I have this attitude toward the sequelae of ritual abuse – I cannot heal the damage, but I can live with it in a different way. Everything I have learned over the years will come in handy, I am sure.

I realize I will be devoting more time to self-care. I will exercise more and pay more attention to my diet and the timing of my meals. One lovely thing is that I have been told I need a high-salt diet. After all these years of deprivation, I can indulge in potato chips without guilt! And I can start using salt when I cook – I wonder whether I will love or hate eating salted veggies and pasta. We shall see.

More self-care, hopefully, will result in feeling better. That’s a big plus. On the minus side, though, it will leave less time for all the things I love. Working with GrassRoots, mentoring, supporting new projects, rewriting material on the website, answering email, and hanging out with old and new friends. It’s going to take time to find a new equilibrium.

I’ll keep you all posted. 

 

 

“On Ritual Abuse”

Rummaging around in my computer, I came across a large file labeled “to be filed.” Inside was the very first article I wrote on ritual abuse. It was published in “Body Memories” in the May/June 1993 issue. The collection of essays written by ritual abuse survivors emphasized societal issues. I remember being unsure if they would accept the piece because my point of view is personal, but I decided to submit it and see what happened.

They published it! I never saw another issue of “Body Memories.” I forgot all about the journal and my article.

Here is what I found in that “to be filed” folder.

“I was born into a Satanic family whose practices traced back to Europe. By day, my family was proper, even dull, with minor little human flaws. By night, they were Satanists, and like all committed parents, they raised their children to adhere to their practices. For me as a child, this meant physical and emotional sadism, lots and lots of group sex and animal sacrifices, some human sacrifices and cannibalism, and acting in pornographic films. As an adult, after I had broken free, it meant endless years of depression and fear, accomplishment sucked dry of every bit of pleasure, a dread of life, and a frustrated desire to disclose what had happened and find some peace.

“Did it really happen? Well, how do you teach a preschooler to have S/M fantasies? Where did that preschooler, who had no television or conventional religious training, learn about the devil, being buried alive in coffins, bearing the devil´s baby? What do you have to do to a child to make them believe, in 1945, that people are selfish, power-hungry, and sadistic, and that the only protection in life is to offer yourself to Satan so that you can be the predator, not the prey? If it wasn’t Satanic abuse, what did they do to me, that I organized my life around this fantasy? Must have been pretty awful.

“I was taught, threatened, and coerced into keeping my abuse secret. The times I slipped and revealed something, people outside the cult usually didn´t notice. When they did, all they saw was that I was odd, different from other children, difficult. In 1945, children’s problems were assumed to arise from within from innate flaws or badness. The expression of children’s pain required suppression and correction rather than serious attention. Is it much different today?

“My life has been blessed as an adult because I managed to escape and no longer had to be tortured or torture others. I raised my children non-abusively, and that is a miracle. And today, I am blessed because I can speak out about my experience and I can share my life with others who have lived through the same atrocities. I suffer the same old despair, but it feels a little less alone to be accepted, believed, comforted, and even (dare I say it) cherished by a few people.

“And yet, socially, ritual abuse survivors are as alone as we have ever been. We are keenly aware of the powerful voices trying to still us with accusations of being narcissistic hysterics jumping on the abuse bandwagon. We hear threats of lawsuits but do not even have the credibility to be arrested for crimes we were forced to participate in. We feel our aloneness most when we disclose and are met by disbelief, total silence, or comments about the weather.

“All who lived through ritual abuse are deeply impaired. Who wouldn’t be scarred by just one incident of the type we suffered day after day? Many survivors can’t keep a job or a relationship. Many of us are chronically suicidal and self-mutilate or cover our pain with amnesia, drugs, or alcohol. We routinely get scapegoated for our symptoms. Most of us don’t have the resources to get assistance from society, and we settle for patronizing crumbs.

“There are some brave and competent people without cult experience who try to understand and help us, but they are few and far between. So we reach within for understanding and solace, and we band together, as best we can, to create for ourselves what society withholds from us. Our deep and precarious friendships clothe our suffering in moments of beauty.

“I have never been believed by society, and I do not expect to be. For if we were to be taken seriously, we would expose that the very foundation of culture, throughout human history and in every country, is abuse, aggression, power-hunger, and sadism. If you believe in the existence of hidden ritual abuse, you will start to be able to identify open ritual abuse in every institution and family you come in contact with.

For ritual abuse is simply systematic physical, emotional, sexual, and/or spiritual abuse in the name of a defined ideology. It is abuse, rationalized as “for your own good” or “for the good of society.” Under this definition, the vast majority of ritual abuse is out in the open and sanctioned by many people. A child who is told he is going to hell for lying, a teenager who beats up people of different races, ethnic cleansing, and the list goes on and on. The difference between my experience and everyday life is only one of degree and secrecy.

If I were to be believed, people would not be able to live with themselves and continue to tolerate such horrors. They would have to change themselves and society. My life has taught me not to dare to expect so much from people.

~~~~~~~~~~

I didn’t give any further thought to the article until, four years later, I was surprised by an email from a survivor thanking me for validating their memories.

Learning of the effect my words had on another person made a huge impression on me. I was not writing in a personal journal, I was writing for real human beings who were suffering just like myself. The stranger who was kind enough to write me became my friend, and we have remained in touch for all these years.

I have never forgotten that my words, my actions, have an effect on others. I may feel like a powerless, terrified little mouse, but that is a flashback to how I felt as a powerless, terrified little girl. In truth, some of my words, to some people, may be life-changing.

For those of you who write and feel you are shouting into a void, take hope. You do not know where your words will land. But I assure you, they will land, and your voice will be heard. Some of your words will be repeated and will reach others. They will live on past the day you first shared them publically, past the day you pushed the “send” button.

Also, it is not just you and I who are speaking out. I cannot imagine how many survivors are on the Internet. Many of them are better known than you and I but that does not diminish the importance of our voices.

The more we speak, the more people will hear us. The more we speak, the more others will be encouraged to speak. It’s possible our number could grow exponentially.

Value-Free Abilities, Feelings, and Actions

Read on! The article is hiding below these short but important, announcements.

Welcome!

For those of you who are new to my blog, thank you for following me! I hope you will find it helpful.

Please use the comments section freely. You may comment on the article, ask for information, or connect with other survivors.

Fathers’ Day –

is the first in a series of Holiday Zoom Open Houses For Survivors of RA/MC.
On miserable, triggery days, like the solstices, equinoxes, Christmas, Easter, and “Hallmark Card” days, survivors often choose to be alone rather than be among people who just don’t understand. Now, thanks to ZOOM and joanies, you have a third choice. Bring a meal or a snack and eat together, or just hang out with other RA/MC survivors. No need to stay the whole time if you don’t want to.

Sunday, June 19, 2022, 2:00 PM-4:00 PM Pacific Time (Not a celebration of Father’s Day – it is a time to celebrate each other!)
Register here https://www.eventbrite.com/e/holiday-zoom-gathering-for-ramc-survivors-tickets-361102716947

Poetry Reading

There will be another virtual poetry reading on Saturday, June 25, from 4:00 PM to 5:30 PM Pacific Time. That is Sunday, June 26, 9:00 AM to 10:30 AM Melbourne, AUS Time. The invitation to attend is open to survivors, therapists, support people, and allies.

This is an open event for any survivor of RA/MC to present a 1-3 minute poem about “Being Victimized, Surviving, and Living Fully.” The poem can be on all three topics or on only one or two of the topics. You may also pair visual art with your poem or perform through song.

The event will be in open-mic style, and presenters will sign up through the chat on the day of the event.

Register here: https://www.eventbrite.com/e/ritual-abuse-survivors-read-their-poems-of-suffering-and-healing-tickets-291878545587

Value-Free Abilities, Feelings, and Actions

This is a topic I have been mulling over for years now. I’ll tell you what started me off.

I realized that some of the qualities in myself that I value had also been valued by the cult. I can’t say they were exactly nurtured, for they were demanded on pain of lots and lots of pain if I fell short. Each year, each month, each week, more and more was expected of me. But they did develop in this harsh environment.

Early on, I recognized that my body healed rapidly. It wasn’t until 1999, when I read Judith Spencer’s book, “Suffer the Child,” that I learned that this is a trait that was highly prized by at least one other Satanic cult. I don’t remember hearing about it since, but I don’t need further validation. It makes perfect sense to me.

It is easy to see that the physical process of rapid healing works in both environments. So how could it be a “good” thing or a “bad” thing? It just was.

Intelligence was a more complex concept for me to deal with. I could tell that the grown-ups around me valued intelligence. However, I was very confused about the concept and believed I was stupid. I compared myself, not with ordinarey people, but with those with exceptionally high IQs. The degree of perfectionism was ridiculous – if I wasn’t the best in the world, I must be stupid.

It didn’t help that I didn’t fit in with the other kids. They all had friends, and I didn’t; therefore, I must be dumb because I couldn’t even figure out how to have a friend. Or carry a tune or throw and catch a ball, for that matter. I was so confused that, at one point, I thought maybe I didn’t have friends because I scored higher on tests than they did. I tried to get the answers wrong but failed because I got interested in the material and forgot what I had set out to do. Oh well.

I have a little scar on my forehead marking the destruction by radiation of a growing birthmark. I told the kids I suffered brain damage from this procedure when I was three months old. Brain damage! Little did I know!

In time, I realized I wasn’t stupid; I was just a misfit. And when I remembered my abuse, I could see that my intelligence was valued in the cult as well as at home and at school. How could it be valued both by evil people and by kind, ethical people? It must be outside the categories of good and evil, or above it, part but not part of both moral systems at the same time.

I started thinking of all the things that were accepted and valued in both the day-life and the night-life as value-free. Like stars, for example. Stars aren’t good or bad; they just are.

Before I started writing this post, I looked up the definitions of value-free and value-neutral.

According to the Oxford Learners’ Dictionaries, value-free means “not influenced by personal opinions.“ Not surprisingly, value-laden means “influenced by personal opinions.”

Oxford Reference defines value-neutral as
adjective
• Not presupposing the acceptance of any particular values.
•  ‘Morality involves value judgments, and I want my intelligences to be value-neutral.” 
“The situation in which a participant in a controversial situation is impartial and not influenced by personal beliefs, attitudes, or values, a situation that may often be more theoretical than real. Philosophers of science have long debated the question of whether science can ever be truly value neutral, starting from the premise that the scientific approach to problem solving in itself requires values that accept the importance and relevance of so doing, in addition to the values implied in the search itself, such as the definition of truth. Beyond this, the ethical and moral choices that biological and health scientists must frequently make will always require them to hold certain values.”

Interesting.

Perhaps because I am dissociated, I imagine something that is value-free or value-neutral floating above whatever is going on at the moment. Sort of like my consciousness, except it isn’t conscious. My understanding of the concept is visual; I can see it clearly but have to scramble for words.

Do you know those little glass pendents that contain mustard seeds or open so you can use them as lockets and put a tiny photograph in them? There are all sorts of beads that size, some very fancy. I have a black enamel bead with an elaborate flower pattern and a white bead, again with a flower pattern. I wear them together to symbolize value-neutrality. The little flowers exist in both dark and light settings.

When I feel shame or guilt about something, they remind me that I am in a feeling-flashback. For example, there is no reason to feel shame about sex or guilt about anger. These things just are, like the stars and flowers just are, although they can be used for good or for evil. This belief allows me to think more calmly and more clearly.

Now I understand, with relief and gratitude, that as soon as I got free, I consistently tried my best to use my intelligence and the skills I learned in the cult to help people, not to harm them.

Upcoming Holidays

June
6/12 (?) Trinity Sunday
6/14 Full Moon
6/16 (?) Corpus Christi/Feast of the Body of Christ
6/19 Fathers’ Day
6/21 Summer solstice
6/23 Midsummer’s Eve

6/24 (?) St John’s Day

 

July
7/4 Independence Day
7/13 Full Moon
7/25 St. James’ Day/Festival of the Horned God
7/27 Grand Climax/Da Meur

August
8/1 Lammas/Lughnasadh
8/11 Full Moon
8/13 Friday the 13th
8/15 (?) Assumption of the Blessed Virgin Mary
8/24 St. Bartholomew’s Day

Dates Important to Nazi and Neo-Nazi groups

6/4 – 6/6  Shavuot (Harvest Festival, Festival of Moses receiving the Ten Commandments)

(NOTE: Not all groups meet on Jewish holidays. Some groups also mark Candlemas, Beltane, Lammas, Halloween, the solstices, and the equinoxes.

You can find more information on the following holidays at:

Candlemas – https://ritualabuse.wordpress.com/2012/01/21/candlemas/
Valentine’s Day – https://ritualabuse.wordpress.com/2016/02/10/valentines-
Beltane – https://ritualabuse.wordpress.com/2013/04/28/beltane/
Mothers’ Day – https://ritualabuse.wordpress.com/2016/04/26/mothers-day/
Fathers’ Day – https://ritualabuse.wordpress.com/2020/06/20/ritual-abuse-and-fathers-day/
Summer Solstice (corrected text) – https://ritualabuse.wordpress.com/2013/06/15/well-this-is-embarrassing/
Lammas – https://ritualabuse.wordpress.com/category/lamas/
and https://ritualabuse.wordpress.com/2012/07/23/august-ritual-dates/ 
Feast of the Beast/Bride of Satan: Part 1 – https://ritualabuse.wordpress.com/2013/08/31/the-feast-of-the-beast/
Feast of the Beast/Bride of Satan: Part 2 – https://ritualabuse.wordpress.com/2017/03/20/feast-of-the-beast-part-ii/
Fall Equinox – https://ritualabuse.wordpress.com/2012/09/16/the-fall-equinox/
Halloween (personal) – https://ritualabuse.wordpress.com/2016/10/11/halloween/ 
Halloween (background) – https://ritualabuse.wordpress.com/2011/10/02/samhainhalloween/
Thanksgiving – https://ritualabuse.wordpress.com/2016/11/20/thanksgiving/
Yule/Winter Solstice – https://ritualabuse.wordpress.com/2012/12/15/yulewinter-solstice/